Saturday, February 28, 2009
One more scare
Woody just shared with me that all the "hot spot" pains that he had been feeling prior to the treatments are gone. Praise God! But...that good news wasn't the end of what he had to tell me. Something had happened to him while I was upstairs. He fell asleep in the recliner and when he woke up he had this really bad pain in his right hip. He got up and limped around and it continued to hurt very badly. He had a dreaded thought come to him: this pain was much like the pain that he had had in his shoulder...could this mean that the melanoma was now attacking his hip bone? He continued to walk around trying to ease up the pain. About an hour after the pain started bothering him, he reached in his pants pocket and found his glasses! He had slept on them! He took the glasses out. Voila! The pain is gradually leaving!!!!!!!! Whew!!!!!!!!!! He certainly gave me a "sinking feeling" when he told the story!
A corner was turned
"A corner being turned" is how Woody described the way he felt the other night after he broke out into a sweat and started feeling better. He also broke out into a sweat last night in the middle of the night--after that he said that he just felt the same--but at least he seems to be slowly climbing up and out of feeling so badly. I guess Dr. Sosman knew what he was talking about when he said that Woody would be feeling better by Wednesday when he can again enter Vanderbilt for the next round of IL-2.
At this point it does look like he plans to go back in for the next round. We know a little more this time and will know when it is time to say "enough is enough!" On the Vanderbilt site there is a way for a patient to log on and view their personal lab work results and see a graph of prior results for the same test. I can guarantee you that I will be watching Woody's creatinine levels very carefully this time--last time I didn't know what to look for till after they got too high--often I could get results of the lab work before the doctors came in--and now that I know what to watch we will have a little more leverage in deciding if he should continue or not. One of the options during the IL-2 treatments is to skip a dose and then take the next dose--so we will be ready to opt out for that also if the after effects get too much for Woody. We also know a little more of what to look for in regards to the side effects that happen within an hour or so after the infusion has finished and can hopefully stop some of them before they get started.
Today Woody walked outside and got the mail and also made his own sandwich at lunch and is now getting what he wants for supper--big improvement! Food is starting to taste better to him--although he says that lots of things still don't taste exactly right. He continues to feel very cold. But all in all he is definitely feeling better.
At this point it does look like he plans to go back in for the next round. We know a little more this time and will know when it is time to say "enough is enough!" On the Vanderbilt site there is a way for a patient to log on and view their personal lab work results and see a graph of prior results for the same test. I can guarantee you that I will be watching Woody's creatinine levels very carefully this time--last time I didn't know what to look for till after they got too high--often I could get results of the lab work before the doctors came in--and now that I know what to watch we will have a little more leverage in deciding if he should continue or not. One of the options during the IL-2 treatments is to skip a dose and then take the next dose--so we will be ready to opt out for that also if the after effects get too much for Woody. We also know a little more of what to look for in regards to the side effects that happen within an hour or so after the infusion has finished and can hopefully stop some of them before they get started.
Today Woody walked outside and got the mail and also made his own sandwich at lunch and is now getting what he wants for supper--big improvement! Food is starting to taste better to him--although he says that lots of things still don't taste exactly right. He continues to feel very cold. But all in all he is definitely feeling better.
Friday, February 27, 2009
Friday update
Woody is now finding out how I often feel--that I just can't get warm--and he was always one who would never turn on the heat as he was comfortable with it being cold in the house. Now he keeps telling me that he just can't get warm. I guess that the IL-2 has messed with his body's thermostat.
Sometime in the night last night Woody broke out in a sweat. He said after that happened he started feeling better. I guess he could have had a slight fever--but I really don't think so--I feel like it was the IL-2. But, whatever it was, he does feel a bit better today. He has done a lap or two through the house, gone up and down stairs several times during the day (rather than reserving the stairs just for coming down in the morning and going up at night), taken a shower, washed his hair, and shaved. Those activities still wore him out, but not quite as much as earlier in the week. So maybe by the time it is time for him to go back into the hospital he will be feeling much better and much stronger. I think that his coloring is better too. He is still peeling, but not as badly as earlier in the week.
A Vanderbilt nutritionist called Woody today. She was trying to make an appointment for him to come in due to the fact that he has lost weight. But he assured her that he was fine and that he was sure that once these treatments are behind him that he would be gaining his weight back. Definitely his appetite is returning. It is becoming a little less difficult to find things that appeal to him--either that or I have just figured out what to offer him! He is eating healthy foods--junk-type foods don't appeal to him--like super sweet things or super salty things.
Sometime in the night last night Woody broke out in a sweat. He said after that happened he started feeling better. I guess he could have had a slight fever--but I really don't think so--I feel like it was the IL-2. But, whatever it was, he does feel a bit better today. He has done a lap or two through the house, gone up and down stairs several times during the day (rather than reserving the stairs just for coming down in the morning and going up at night), taken a shower, washed his hair, and shaved. Those activities still wore him out, but not quite as much as earlier in the week. So maybe by the time it is time for him to go back into the hospital he will be feeling much better and much stronger. I think that his coloring is better too. He is still peeling, but not as badly as earlier in the week.
A Vanderbilt nutritionist called Woody today. She was trying to make an appointment for him to come in due to the fact that he has lost weight. But he assured her that he was fine and that he was sure that once these treatments are behind him that he would be gaining his weight back. Definitely his appetite is returning. It is becoming a little less difficult to find things that appeal to him--either that or I have just figured out what to offer him! He is eating healthy foods--junk-type foods don't appeal to him--like super sweet things or super salty things.
Thursday, February 26, 2009
FYI and Thurs. update
FYI: some points of interest that I have picked up:
1) Dr. Sosman told us on Tuesday that it was unusual to see kidney problems with melanoma patients. IL-2 is approved for use with both melanoma and kidney (renal) cancer--guess that they see kidney problems more with their kidney patients...makes sense. So...when has Woody been "usual" in this treatment?!
2) Here's how scientists make Interleukin 2 (IL-2): They transfer the gene for human IL-2 into bacteria. The bacteria then make the IL-2 protein in large quantities. These quantities can then be purified as a drug.
3) Interleukin 2 (IL-2) is administered in bolus dosing. A bolus dose is a large volume of fluid or dose of a drug given intravenously and rapidly at one time. So Woody, during his treatments, was getting 3 bolus doses in a 24 hour period. Each dose took 15 minutes to be given.
4) Interleukin 2 can't be given in a saline solution--it is given in a Dextrose 5% solution. Prior to giving the IL-2, Woody's IV drip was always changed over to the Dextrose 5% solution to flush out the line. Then they would give the IL-2 bolus with the Dextrose 5% solution which took 15 min. After the IL-2 bolus finished, it was followed for a while longer with the Dextrose 5% solution and then his drip would be switched back to the saline solution. I got to know the "drill" fairly well as I would have to push the nurse call button after the 2nd flushing of the Dextrose solution so she could switch it back to the saline.
5) IL-2 causes "Capillary Leak Syndrome," which is the cause of weight gain, swelling and low blood pressure during the treatments.
Update on Woody: Thurs., Feb. 26
Woody's main complaint at the moment is that his legs ache--which is bothering him most at night. Dr. Sosman's nurse called today to ask me a question about some paper work that they were filling out for us so I asked her what would be appropriate for him to take for these aches. She said ibuprofen--so far Woody hasn't taken any since I talked to her--perhaps at bedtime.
Woody did do a few "laps" in the house today. One "lap" = from his recliner in the family room out to the living room and back. I know that he has done at least two laps today. He also went outside for a quick look at one of our gardens in the back yard. He has also done some crossword puzzles. So I guess he has exercised his body and his mind a bit today.
1) Dr. Sosman told us on Tuesday that it was unusual to see kidney problems with melanoma patients. IL-2 is approved for use with both melanoma and kidney (renal) cancer--guess that they see kidney problems more with their kidney patients...makes sense. So...when has Woody been "usual" in this treatment?!
2) Here's how scientists make Interleukin 2 (IL-2): They transfer the gene for human IL-2 into bacteria. The bacteria then make the IL-2 protein in large quantities. These quantities can then be purified as a drug.
3) Interleukin 2 (IL-2) is administered in bolus dosing. A bolus dose is a large volume of fluid or dose of a drug given intravenously and rapidly at one time. So Woody, during his treatments, was getting 3 bolus doses in a 24 hour period. Each dose took 15 minutes to be given.
4) Interleukin 2 can't be given in a saline solution--it is given in a Dextrose 5% solution. Prior to giving the IL-2, Woody's IV drip was always changed over to the Dextrose 5% solution to flush out the line. Then they would give the IL-2 bolus with the Dextrose 5% solution which took 15 min. After the IL-2 bolus finished, it was followed for a while longer with the Dextrose 5% solution and then his drip would be switched back to the saline solution. I got to know the "drill" fairly well as I would have to push the nurse call button after the 2nd flushing of the Dextrose solution so she could switch it back to the saline.
5) IL-2 causes "Capillary Leak Syndrome," which is the cause of weight gain, swelling and low blood pressure during the treatments.
Update on Woody: Thurs., Feb. 26
Woody's main complaint at the moment is that his legs ache--which is bothering him most at night. Dr. Sosman's nurse called today to ask me a question about some paper work that they were filling out for us so I asked her what would be appropriate for him to take for these aches. She said ibuprofen--so far Woody hasn't taken any since I talked to her--perhaps at bedtime.
Woody did do a few "laps" in the house today. One "lap" = from his recliner in the family room out to the living room and back. I know that he has done at least two laps today. He also went outside for a quick look at one of our gardens in the back yard. He has also done some crossword puzzles. So I guess he has exercised his body and his mind a bit today.
Wednesday, February 25, 2009
Peeling!
One of the side effects of IL-2 is that your skin gets very dry. And when it gets so dry it starts peeling--much like it does when you have a bad sun burn. Woody looks like he has had quite a bad sunburn or a very bad case of dandruff--he leaves flakes of skin just about wherever he goes! The dry patches are on his face (even on his eyelids), scalp, neck, arms (especially the arm that is broken and in a cast most of the time), hands, and back. Earlier today he was just rolling the dry skin off one of his hands. This dryness and peeling does make him itch also. We were given Eucerin cream to put on the dry areas and that does help some--at least for a short period of time right after we put it on. But then the dry "peely" skin is back.
One of the things that Dr. Sosman told us yesterday is that we won't talk about setting a surgery date for fixing Woody's broken lower left arm until after the peeling has stopped. The peeling skin could cause an infection to set into the surgical site. Always one more thing to take into consideration! Of course Woody isn't ready to face surgery yet, anyway!
Woody is still pretty weak. He is eating better--although things still just don't taste right to him--even ice cream doesn't taste right. At the moment I want to get some calories into him so he will put on a bit of weight that he has lost--so he will have it to lose again if he does undergo this next set of treatments. We're still not talking about next week--just focusing on getting him stronger this week.
I told him that we were going to start walking laps tomorrow--from the family room to the living room and back! He needs to start doing some sort of exercising to get his "get-up-and-go" back!
One of the things that Dr. Sosman told us yesterday is that we won't talk about setting a surgery date for fixing Woody's broken lower left arm until after the peeling has stopped. The peeling skin could cause an infection to set into the surgical site. Always one more thing to take into consideration! Of course Woody isn't ready to face surgery yet, anyway!
Woody is still pretty weak. He is eating better--although things still just don't taste right to him--even ice cream doesn't taste right. At the moment I want to get some calories into him so he will put on a bit of weight that he has lost--so he will have it to lose again if he does undergo this next set of treatments. We're still not talking about next week--just focusing on getting him stronger this week.
I told him that we were going to start walking laps tomorrow--from the family room to the living room and back! He needs to start doing some sort of exercising to get his "get-up-and-go" back!
Tuesday, February 24, 2009
Here we go again?
We are back from another long day at Vanderbilt--left the house at 10:30am and didn't return till 5pm. It's hard to be gone for such a long time when you don't feel well--but Woody made it there and back and he is now back in his recliner.
We probably spent more time in waiting rooms than with the doctor--but that's the way it goes so often with doctor visits. Dr. Sosman is encouraging Woody to continue with the next set of 5 days of treatments. Left up to Woody at the moment he would pass on taking any more. Dr. Sosman inferred that more positive results are seen when infusions are taken in both of the 5 day time periods. Dr. Sosman was sure that Woody would be feeling much stronger by next week! Woody looked at him rather questioningly! And, if labs are pretty close to normal then Woody would be given a green light for more IL-2. So we are to go back to see Dr. Sosman next Tuesday (Mar. 3) for him to check Woody out and make sure that he is strong enough. Woody will have blood work done again that day. Then if everything checks out ok... AND IF Woody is agreeable to it...Woody will be checking back into Vandy the next day (Wed., Mar. 4) to under go the second set of Interleukin 2 treatments.
This is the first time that any "magical" number of infusions has been said to us. But, today, Dr. Sosman told us that they like to get as close to 20 infusions as possible. I'm not sure that Woody is up to another 8 or not! He had really about made up his mind that he wasn't going back for any more. Again, time will tell.
I just checked his lab report online and the creatinine levels are almost back to normal. Praise God!
The doctors encouraged him to keep drinking lots and also eating--as he has lost weight--he gained in the hospital due to water retention from all the fluids pumped into him, but has now lost that weight plus more. I told them that I was "trying" to get him to eat...but that it was difficult to tempt him these days! They realize that things just don't taste right to him.
So prayer suggestions...I guess...for wisdom...both for the doctors and for us; for Woody's strength to return; for his body to continue to return to normal levels; and for peace of mind for Woody in the decision that looms before him.
We probably spent more time in waiting rooms than with the doctor--but that's the way it goes so often with doctor visits. Dr. Sosman is encouraging Woody to continue with the next set of 5 days of treatments. Left up to Woody at the moment he would pass on taking any more. Dr. Sosman inferred that more positive results are seen when infusions are taken in both of the 5 day time periods. Dr. Sosman was sure that Woody would be feeling much stronger by next week! Woody looked at him rather questioningly! And, if labs are pretty close to normal then Woody would be given a green light for more IL-2. So we are to go back to see Dr. Sosman next Tuesday (Mar. 3) for him to check Woody out and make sure that he is strong enough. Woody will have blood work done again that day. Then if everything checks out ok... AND IF Woody is agreeable to it...Woody will be checking back into Vandy the next day (Wed., Mar. 4) to under go the second set of Interleukin 2 treatments.
This is the first time that any "magical" number of infusions has been said to us. But, today, Dr. Sosman told us that they like to get as close to 20 infusions as possible. I'm not sure that Woody is up to another 8 or not! He had really about made up his mind that he wasn't going back for any more. Again, time will tell.
I just checked his lab report online and the creatinine levels are almost back to normal. Praise God!
The doctors encouraged him to keep drinking lots and also eating--as he has lost weight--he gained in the hospital due to water retention from all the fluids pumped into him, but has now lost that weight plus more. I told them that I was "trying" to get him to eat...but that it was difficult to tempt him these days! They realize that things just don't taste right to him.
So prayer suggestions...I guess...for wisdom...both for the doctors and for us; for Woody's strength to return; for his body to continue to return to normal levels; and for peace of mind for Woody in the decision that looms before him.
Monday, February 23, 2009
Monday
Woody is still feeling puny. I thought this morning that he was much better, but he faded as the day continued.
We go back to see Dr. Sosman tomorrow. It will be good to hear what Dr. Sosman has to say and also to get more labs done so we can make sure that Woody's creatinine levels are going down.
So...I'll be giving you a doctor report tomorrow.
We go back to see Dr. Sosman tomorrow. It will be good to hear what Dr. Sosman has to say and also to get more labs done so we can make sure that Woody's creatinine levels are going down.
So...I'll be giving you a doctor report tomorrow.
Sunday, February 22, 2009
Sunday update
Things are pretty much the same with Woody--maybe there is slight improvement--but he still remains very weak. I am still having to tempt him with food. That seems so strange since he has always said he would try anything at least once! And he usually likes just about anything. Most things are just "so-so" in the way they taste to him. But I do think that he has eaten just a bit more today than he has in the past few days--so that is good.
Friday I checked out some movies from the library. He did watch one of them today.
It has been a lazy day for both of us. It seems like every time I sat down today I would doze off--I have had several naps.
Keep praying for Woody's strength to return.
Friday I checked out some movies from the library. He did watch one of them today.
It has been a lazy day for both of us. It seems like every time I sat down today I would doze off--I have had several naps.
Keep praying for Woody's strength to return.
Saturday, February 21, 2009
Back to the mundane?
We finally get back home and what happens...but the water heater starts acting up...guess we are back to normal???? Could have done without any household problems for a while!
Woody is slowly regaining his strength...note emphasis on "slowly!" He took a bath and shaved this morning...so that's two "more normal" activities. He did nap for a while after that effort. Then he watched basketball and worked a crossword puzzle this afternoon. So he hasn't just slept the day away. He even ate some chili that was left over from Graham's 7th birthday party. But some things still don't taste right to him...like cereal with milk on it...go figure...and a strawberry pop tart tasted like chocolate...strange, strange!
Woody is slowly regaining his strength...note emphasis on "slowly!" He took a bath and shaved this morning...so that's two "more normal" activities. He did nap for a while after that effort. Then he watched basketball and worked a crossword puzzle this afternoon. So he hasn't just slept the day away. He even ate some chili that was left over from Graham's 7th birthday party. But some things still don't taste right to him...like cereal with milk on it...go figure...and a strawberry pop tart tasted like chocolate...strange, strange!
Friday, February 20, 2009
Friday update
Woody is still very weak. He has rested a lot today after not having the best of nights. He did start eating a bit more today--but still has next to no appetite--and it's hard to find the right things to tempt him. I'm working on it though and have been successful at finding him something that tastes good to him a couple of times today.
I did talk to Dr. Sosman's office today. Definitely the IL-2 treatment that is scheduled to start this coming Wed. (Feb. 25) will be postponed for the time being until he has regained his strength and his kidneys have recovered. We will be going to see Dr. Sosman on Tuesday (Feb. 24) as scheduled as Dr Sosman will need to see Woody in person to see how he is doing and also they will do bloodwork to make sure that his creatinine levels are still on the downward swing.
Pray for his strength to return and for his kidneys to recover.
I did talk to Dr. Sosman's office today. Definitely the IL-2 treatment that is scheduled to start this coming Wed. (Feb. 25) will be postponed for the time being until he has regained his strength and his kidneys have recovered. We will be going to see Dr. Sosman on Tuesday (Feb. 24) as scheduled as Dr Sosman will need to see Woody in person to see how he is doing and also they will do bloodwork to make sure that his creatinine levels are still on the downward swing.
Pray for his strength to return and for his kidneys to recover.
Thursday, February 19, 2009
Home Sweet Home!
We got discharged rather quickly this morning (Thurs.). Nathan arrived around 9:30am and we were underway by 10am and home by 11:30am.
It is very good to be home!!!!!!! Woody has rested most of the afternoon which he needs to do to regain his strength. He still doesn't have much appetite, but I am sure that will increase as he gets home and rests in his own recliner and bed and starts walking around in the house. He has been so sick and weak that he has stayed in bed most of the time in the hospital. And, our sleep has been so interrupted over the last week that I'm not sure that we will ever catch up! I took a nap this afternoon too. I feel like a truck has run over me--all adrenalin has left. So, some days at home resting should have us both up and going again shortly--we hope.
Our homecoming wasn't without drama. Nathan asked Woody if he needed help getting out of the car and into the house. "Of course" Woody said that he didn't. So we let Woody make his own way inside. Nathan started getting our things out of the car, and I headed up to the house to unlock the door. I turned back and saw that Woody had walked to the mail box and that he had a fleece throw around his shoulders. I set what was in my hands inside the house and was turning to go get some more things out of the car and the next thing Nathan and I knew...Woody was flat...well, not really flat...he had fallen forward as he started up the steps. Thank goodness for the fleece throw as it went under him and protected/cushioned him from hitting the rough steps directly. The main pain that he felt was in his broken/surgery arm. But Woody assured us that not much more could have happened to his arm than had already happened and he wanted us to help him up. Between Nathan and me with Woody's help, we got him up. The first thing that Woody said was that he hadn't realized how weak he really was. Guess he found out the hard way! But he seems none the worse for wear. It just shook the three of us up a bit. As I keep having to say...never a dull moment!
But the bottom line is that we are home! The way things look, the next treatments will not happen next week as Woody will need time for his kidneys to recover before considering going back for more of the IL-2. Woody will see Dr. Sosman next week and we will talk about future treatments then. Also Woody will have more lab work done that day to be sure that his kidneys are still in recovery mode.
It is very good to be home!!!!!!! Woody has rested most of the afternoon which he needs to do to regain his strength. He still doesn't have much appetite, but I am sure that will increase as he gets home and rests in his own recliner and bed and starts walking around in the house. He has been so sick and weak that he has stayed in bed most of the time in the hospital. And, our sleep has been so interrupted over the last week that I'm not sure that we will ever catch up! I took a nap this afternoon too. I feel like a truck has run over me--all adrenalin has left. So, some days at home resting should have us both up and going again shortly--we hope.
Our homecoming wasn't without drama. Nathan asked Woody if he needed help getting out of the car and into the house. "Of course" Woody said that he didn't. So we let Woody make his own way inside. Nathan started getting our things out of the car, and I headed up to the house to unlock the door. I turned back and saw that Woody had walked to the mail box and that he had a fleece throw around his shoulders. I set what was in my hands inside the house and was turning to go get some more things out of the car and the next thing Nathan and I knew...Woody was flat...well, not really flat...he had fallen forward as he started up the steps. Thank goodness for the fleece throw as it went under him and protected/cushioned him from hitting the rough steps directly. The main pain that he felt was in his broken/surgery arm. But Woody assured us that not much more could have happened to his arm than had already happened and he wanted us to help him up. Between Nathan and me with Woody's help, we got him up. The first thing that Woody said was that he hadn't realized how weak he really was. Guess he found out the hard way! But he seems none the worse for wear. It just shook the three of us up a bit. As I keep having to say...never a dull moment!
But the bottom line is that we are home! The way things look, the next treatments will not happen next week as Woody will need time for his kidneys to recover before considering going back for more of the IL-2. Woody will see Dr. Sosman next week and we will talk about future treatments then. Also Woody will have more lab work done that day to be sure that his kidneys are still in recovery mode.
Wednesday, February 18, 2009
Too many Indian Chiefs?
Not sure that each group of doctors communicate with each other. We have the group of oncologist doctors and now we have the kidney doctor and her group. The kidney doctor told us that Woody would be having an ultrasound of the kidneys. Then the medical student from the oncology group came in to tell us that the numbers for his creatinine were finally going down so he would be able to go home tomorrow (Thurs.) whenever it was convenient for our ride to be here! Then when she found out that Nathan and family were on the way she went back and talked to her group and came back and said that if the readings went down again at 4pm when they did lab work again...then he could go home tonight. She didn't realize that Nathan wouldn't have room for us with all his family! We mentioned the ultrasound that the kidney doctor wanted to do and she didn't know anything about that, but she thought that it wouldn't happen since the creatinine numbers were coming down.
Nathan arrived and went up to visit with Woody and I went downstairs to visit with Kathy, Graham, Abigail, Joy, and Esther. We visited a bit and toured the downstairs so we could find a bathroom for the children. Then we went back outside so the children could run off some of their energy. Not long after that Nathan was back, as they had taken Woody for the ultrasound--that we had been told probably would not be happening.
Then when Woody got back to the room he got rehooked up for his saline IV and the nurse told him that he would have an IV drip for the rest of the time--at least two bags! So if that was going to happen, we certainly weren't going to be able to go home tonight (Wed.). And, we're not sure who the "they" is that ordered this--kidney or oconologists--I'm guessing the kidney doctor. Well, I just asked and I had guessed wrong--it was the oncologists. And the lab work that we were told would be done at 4pm has just been done at 6pm.
So, now do we really get to go home tomorrow or not--and who has the final say????? Like I say--too many Indian Chiefs--which one will get the final say so? Guess time will tell. I do think that as long as the numbers are going in a downward trend that he will be released tomorrow. But at this point I'm not going to hold my breath!
Nathan arrived and went up to visit with Woody and I went downstairs to visit with Kathy, Graham, Abigail, Joy, and Esther. We visited a bit and toured the downstairs so we could find a bathroom for the children. Then we went back outside so the children could run off some of their energy. Not long after that Nathan was back, as they had taken Woody for the ultrasound--that we had been told probably would not be happening.
Then when Woody got back to the room he got rehooked up for his saline IV and the nurse told him that he would have an IV drip for the rest of the time--at least two bags! So if that was going to happen, we certainly weren't going to be able to go home tonight (Wed.). And, we're not sure who the "they" is that ordered this--kidney or oconologists--I'm guessing the kidney doctor. Well, I just asked and I had guessed wrong--it was the oncologists. And the lab work that we were told would be done at 4pm has just been done at 6pm.
So, now do we really get to go home tomorrow or not--and who has the final say????? Like I say--too many Indian Chiefs--which one will get the final say so? Guess time will tell. I do think that as long as the numbers are going in a downward trend that he will be released tomorrow. But at this point I'm not going to hold my breath!
Still hangin' out at Vandy
Not happily, but we're hanging out! Woody really is feeling better and his appetite is sort of starting to come back--he's not eating much--but at least he's starting to eat. Of course having to deal with more problems may make him lose his appetite again! They are drawing more blood, changing dressings on his pic line, starting more saline solution by IV, taking vital signs, scheduling an ultra sound of his kidneys...and who knows what else! We've seen familiar doctors and met new doctors.
Nathan, Kathy, Graham, Abigail, Joy and Esther are planning to do a bit of rescuing--bringing me a replenishment to my medicine and some other things that we have thought of that we need and we'll send back some things that we have found out that we don't need. We're just hoping that the weather holds out for them and doesn't become threatening. As Kathy said: "What's with the weather on Wednesday's?" Last week we were in threatening weather as Melany brought us to the hospital.
Keep praying that the creatinine levels start going down and that there hasn't been any major damage done to the kidneys due to the IL-2 treatments. We know that his levels were ok prior to his treatments--so know that "something" this past week has done "something" to cause these levels to rise.
Nathan, Kathy, Graham, Abigail, Joy and Esther are planning to do a bit of rescuing--bringing me a replenishment to my medicine and some other things that we have thought of that we need and we'll send back some things that we have found out that we don't need. We're just hoping that the weather holds out for them and doesn't become threatening. As Kathy said: "What's with the weather on Wednesday's?" Last week we were in threatening weather as Melany brought us to the hospital.
Keep praying that the creatinine levels start going down and that there hasn't been any major damage done to the kidneys due to the IL-2 treatments. We know that his levels were ok prior to his treatments--so know that "something" this past week has done "something" to cause these levels to rise.
Tuesday, February 17, 2009
Hopes were dashed
We were told that Woody was being dismissed--and then the word changed. The medical student assigned to Woody's case came in and told us that his numbers were still climbing and that we have to stay at least one more night/day. Then to top it off they had to move us to another room--so we are now on the 8th floor with not a good view! The room is a bit bigger--but I would choose familiarity over bigger!
So be praying that the numbers go down for his creatinine and other readings. I think that this is unusual--why do we have to do the unusual??!! I am in favor of doing the usual/normal!
I did find out from our 11th floor nurse, when she was helping me transfer all our stuff, that the date for Woody to start his next IL-2 is not set in stone--that since this complication has come up that the dates for the next infusions might be pushed off a bit--so we will see. I know that Woody can't imagine coming back for more next week. We will see what his melanoma doctor says.
Needless to say, Woody is a bit down about not getting to go home today--me too!
So be praying that the numbers go down for his creatinine and other readings. I think that this is unusual--why do we have to do the unusual??!! I am in favor of doing the usual/normal!
I did find out from our 11th floor nurse, when she was helping me transfer all our stuff, that the date for Woody to start his next IL-2 is not set in stone--that since this complication has come up that the dates for the next infusions might be pushed off a bit--so we will see. I know that Woody can't imagine coming back for more next week. We will see what his melanoma doctor says.
Needless to say, Woody is a bit down about not getting to go home today--me too!
Monday, February 16, 2009
Prayers answered quickly!
The doctor came in and talked to us and said that often it takes a while for the kidneys to wake up after these treatments. He told Woody to go on and drink as much as possible. Shortly after the doctor left his kidneys did start working! Drama settling down. Woody still has a long way to go--but he is starting on the right path. Praise God!
Extra prayers needed!
Woody hasn't rebounded as we had hoped. His nurse just came in to draw more blood for labs. His creatinine level is rising rather than lowering. This is a test that measures kidney function.
He is still fighting nausea so he's not eating anything and drinking very little. He is also very hoarse due to extremely dry mouth that I guess is partially due to the treatments and partially due to lack of fluid intake.
He feels worse than lousy and that is probably an understatement! Again, they keep reminding us that this is the roughest treatment that they see up here--and we are in the cancer/chemo ward.
Pray that his creatinine levels start dropping. Pray that he didn't take one or two or...? too many treatments.
One of the doctor's may be by later after the latest lab results are back.
Wish that I had better news to share. I'm certainly glad that we are here rather than at home--even though I really wanted earlier to be heading home!
Hoping that this drama plays out to not be a problem as the one in the recovery room and the one the other morning. But a few extra prayers never hurt anyone!
He is still fighting nausea so he's not eating anything and drinking very little. He is also very hoarse due to extremely dry mouth that I guess is partially due to the treatments and partially due to lack of fluid intake.
He feels worse than lousy and that is probably an understatement! Again, they keep reminding us that this is the roughest treatment that they see up here--and we are in the cancer/chemo ward.
Pray that his creatinine levels start dropping. Pray that he didn't take one or two or...? too many treatments.
One of the doctor's may be by later after the latest lab results are back.
Wish that I had better news to share. I'm certainly glad that we are here rather than at home--even though I really wanted earlier to be heading home!
Hoping that this drama plays out to not be a problem as the one in the recovery room and the one the other morning. But a few extra prayers never hurt anyone!
An even dozen
His treatments stopped with the 12th dose yesterday (Sunday) afternoon. At 3am or so he could already tell that he hadn't had a dose. A little after that time he got to feeling not so great again...but things are heading in the direction of him feeling better. Prior to all the doctors coming in Woody and I talked and I asked him if he was going to take the dose if they said that he could and he said that he didn't think so. It was my feeling that it wasn't worth it to push him over "the brink." He had already taken more than most take in their first five days of treatments. When the team came in the attending physician said that there weren't going to be any more treatments this round. So the decision was taken out of Woody's hands--which was what I was hoping would happen.
Now, for what we weren't told up front--"never expect to go home on the day that the treatments end." (We were just told that for the first time today by the attending physician.) So we won't be going home until tomorrow and possibly not till Wednesday. I am not the happiest of campers as things were planned for the way we had been told originally: "five days in...seven out...and five in." I had looked at the calendar and realized that more days were built in from what I "thought" was our day to come home to the day we are to check back in...but it didn't dawn on me...I just went with what we had been told. Woody also said that he was "sad" not to be going home today. I know this will be best as we have to get his system back to working--as a lot has been compromised during these five days of treatment.
They will be doing blood work again this afternoon to see that "things" are heading back in the right direction. They are pumping more fluid into him to get his kidneys working properly again. They keep telling us that usually the problems caused by this treatment are quickly resolved. They said that he will do a lot of sleeping for a couple of days after he gets home and then he should gradually start feeling "normal" again.
One thing that I can already note that is improving is his heart rate--it has slowed down dramatically.
Now, for what we weren't told up front--"never expect to go home on the day that the treatments end." (We were just told that for the first time today by the attending physician.) So we won't be going home until tomorrow and possibly not till Wednesday. I am not the happiest of campers as things were planned for the way we had been told originally: "five days in...seven out...and five in." I had looked at the calendar and realized that more days were built in from what I "thought" was our day to come home to the day we are to check back in...but it didn't dawn on me...I just went with what we had been told. Woody also said that he was "sad" not to be going home today. I know this will be best as we have to get his system back to working--as a lot has been compromised during these five days of treatment.
They will be doing blood work again this afternoon to see that "things" are heading back in the right direction. They are pumping more fluid into him to get his kidneys working properly again. They keep telling us that usually the problems caused by this treatment are quickly resolved. They said that he will do a lot of sleeping for a couple of days after he gets home and then he should gradually start feeling "normal" again.
One thing that I can already note that is improving is his heart rate--it has slowed down dramatically.
Sunday, February 15, 2009
No go for dose 13, but maybe 1 to go
Woody will not be getting dose 13. His sodium bicarbonate level was off in his labs--so they are going to attempt to replenish it tonight through an IV drip then they will do more lab work in the morning to check to see if it is up enough so he can get one last dose for this go around at 6am.
I had a feeling after dose 12 that he might not be having #13 tonight. He had another rough time after the infusion. This time he slept through most of the rigors (quakes) because they had given him meds to lesson them which made him very sleepy. The rigors lasted over an hour--but he was unaware of most of them--so that made it better. He is sound asleep as I type this due to all the meds that they gave him this afternoon--so he should have a good night's sleep--till they awaken him to take labs, etc. very early in the morning
Everyone is still amazed that he has withstood as many infusions as he has. I'm looking forward to a better night's sleep than last--no fever, no shakes, just sleep hopefully!
I had a feeling after dose 12 that he might not be having #13 tonight. He had another rough time after the infusion. This time he slept through most of the rigors (quakes) because they had given him meds to lesson them which made him very sleepy. The rigors lasted over an hour--but he was unaware of most of them--so that made it better. He is sound asleep as I type this due to all the meds that they gave him this afternoon--so he should have a good night's sleep--till they awaken him to take labs, etc. very early in the morning
Everyone is still amazed that he has withstood as many infusions as he has. I'm looking forward to a better night's sleep than last--no fever, no shakes, just sleep hopefully!
2 to go!
Dose 12 of IL-2 got underway around 3:35 pm. The lateness of his 2pm dose is due to the doctors having to evaluate all Woody's labs and decide if he should take this dose or skip this one = have a break and take the 10pm dose. There is a two-hour window for when the dose can be started--so for this dose any time between 2pm and 4pm. They finally made their decision and dose #12 is underway. Precautions are being taken this time to try to prevent the shakes (quakes as I have named them) or what they are really called in the medical field = "rigors" = chills.
I'll report later as to how he does after this dose.
Please pray that he doesn't have as many problems as he had with the last two doses.
I'll report later as to how he does after this dose.
Please pray that he doesn't have as many problems as he had with the last two doses.
3 to go...and I feel like I just left the set of a TV doctor show!
Oh, my...where do I begin? Woody was actually feeling pretty well just before his 11th IL-2 infusion. And he got through the infusion without a problem. After I pushed the call button to tell the nurse that the infusion was finished, both of us decided that we would try to rest. I know that I dozed off because I suddenly heard Woody call my name. He felt a chill which is often the start of "the shakes." So I "jumped" off my "bed" quickly and hit the call button for the nurse. The quicker you get the meds the less the shakes (quakes) are. The nurse finally got here--and it was a new nurse and new care partner. By the time she got here the shakes hadn't started so Woody thought that it was a false alarm. BUT he had started getting nauseated so the nurse started treating that and suggested a different med than he had had before for the shakes...something to take before they started that worked well to stop them quickly. Well, by the time all the meds got here, he had started shaking (quaking is a better word), which meant that perhaps the other med would be better. Well, the nurse tried to take his blood pressure--and it was waaaaaaaaaaaaay low. Well, this other med shouldn't be taken when the blood pressure was low--so we went with the new med--that was pill form--works better if you let it dissolve under the tongue--well, Woody's mouth was so dry that it wouldn't dissolve so he just had to swallow it. All the while he is shaking very hard. Of course the nurse is trying to get information to various people about Woody's low blood pressure, etc. And he was still shaking--at times very violently. He was trying to breathe to help control the shakes--but getting to the point of hyper-ventilating. So much ended up going on that I'm not sure how long his quakes went on--but way too long!
And, then, along comes the "team" of doctors--much to the relief of all. The head doctor said to give him the one med in his IV and it wasn't long till the shakes were lessening. But of course they still had to figure about his blood pressure. The head doctor said that he was way too warm and had too good coloring to have such low blood pressure. They were trying to find a blood pressure cuff to do his blood pressure manually rather than with the computerized blood pressure machine. They finally found a cuff, but it was in bad shape and couldn't be used!
As an aside I need to explain that Woody has to have his blood pressure taken on his leg since he has the broken/surgery arm and then the other arm has the pic line in it. So they were having quite the time trying to get the cuff in just the right place on his leg, etc., etc.
They finally got it adjusted and got a good read and his blood pressure was fine. They decided that due to his shaking they hadn't been able to get the cuff on correctly.
But for a while I did feel like I was in the midst of a hospital TV show! I just sat quietly in the corner and watched all the action--TV medical drama at its best!
Shortly after all that, Woody's temperature went up quite high again. So we have been trying to get him cooled down. As I type this, they have just taken his temperature and it has come way down--not normal but close. Now they are doing his lab to get him ready for his next IL-2. He and I both have rested a bit after the shaking episode and starring in our own "doctor TV episode!" My prayer is that he isn't too weakened to endure this next treatment that is to start in just a few hours. At the moment he is resting peacefully.
So...just three to go! Pray for his strength and doctors' wisdom. I was told today that often it is one episode of the "quakes" that makes IL-2 patients give up and go home. Woody has endured his share of these episodes, but hasn't thrown in the towel yet. Those young medical students may get their hope yet--to see someone go through 14 on the first round! And they will...that is, if it is God's will!
And, then, along comes the "team" of doctors--much to the relief of all. The head doctor said to give him the one med in his IV and it wasn't long till the shakes were lessening. But of course they still had to figure about his blood pressure. The head doctor said that he was way too warm and had too good coloring to have such low blood pressure. They were trying to find a blood pressure cuff to do his blood pressure manually rather than with the computerized blood pressure machine. They finally found a cuff, but it was in bad shape and couldn't be used!
As an aside I need to explain that Woody has to have his blood pressure taken on his leg since he has the broken/surgery arm and then the other arm has the pic line in it. So they were having quite the time trying to get the cuff in just the right place on his leg, etc., etc.
They finally got it adjusted and got a good read and his blood pressure was fine. They decided that due to his shaking they hadn't been able to get the cuff on correctly.
But for a while I did feel like I was in the midst of a hospital TV show! I just sat quietly in the corner and watched all the action--TV medical drama at its best!
Shortly after all that, Woody's temperature went up quite high again. So we have been trying to get him cooled down. As I type this, they have just taken his temperature and it has come way down--not normal but close. Now they are doing his lab to get him ready for his next IL-2. He and I both have rested a bit after the shaking episode and starring in our own "doctor TV episode!" My prayer is that he isn't too weakened to endure this next treatment that is to start in just a few hours. At the moment he is resting peacefully.
So...just three to go! Pray for his strength and doctors' wisdom. I was told today that often it is one episode of the "quakes" that makes IL-2 patients give up and go home. Woody has endured his share of these episodes, but hasn't thrown in the towel yet. Those young medical students may get their hope yet--to see someone go through 14 on the first round! And they will...that is, if it is God's will!
4 to go
The 10th dose along with the 9th dose have been the hardest so far. Woody had fevers at some time during both of those doses along with flushing and having the shakes. It has been a long night after the 10th dose. I spent most of it wiping Woody down with a wash cloth made as cold as I could get it. He was miserable. About the only sleep that he got with either of these doses was when they gave him the med to stop his shaking. That med is injected into his IV line and goes to work very quickly--it eases the shakes within minutes and also puts him to sleep. He didn't have any nausea with the 10th dose which is a good thing. And, for the first time in a long time, he is asking for water and ice and even Sprite and more vanilla ice cream. He thinks that he will try strawberry the next time he has some ice cream! It is good that he is even thinking about eating even if it is just ice and ice cream! For several days he hasn't even wanted to hear the word "food" much less think about eating anything! Smells are bothering him and the taste of things has changed--I'm sure due to the IL-2.
We each did get a bit of sleep...but not much/enough.
He is feeling much better just as it is about time for the 11th dose...but the end is in sight. I'll post about the 11th dose later.
We each did get a bit of sleep...but not much/enough.
He is feeling much better just as it is about time for the 11th dose...but the end is in sight. I'll post about the 11th dose later.
Saturday, February 14, 2009
5 to go!
He just finished his 9th dose. Praise God! His attending resident for today said that Woody was doing better than she had ever seen a patient do on IL-2--not sure how many she has seen--but definitely some. They are very impressed that he isn't having any breathing problems--that must be something that goes with IL-2 territory. Of course Woody scored really top notch when he had his pulmonary tests done. When we saw Dr. Sosman on Tuesday, he said that Woody had scored more than 100%. I see excitement in the young docs and docs-to-be--they like the way Woody is responding to the treatments!
We did learn today that he is the only patient here at the moment having IL-2. Also learned that IL-2 is something that we have naturally in our bodies--it is what makes us feel the way we do when we have the flu--so Woody is being given flu-like feelings multiplied many, many times over. We were told that this treatment is the roughest given here--and that speaks volumes since we are in the cancer unit.
We're still working on getting some of his meds down him today. He is very nauseated--so rather hard for him to swallow six or seven pills. He has taken the essential ones and will take the others when he thinks he can. He has had some meds for nausea so hope that they help. He did get unhooked from his IV pole for a while prior to this last treatment. He got up and sat in a chair and checked a couple of things on the computer while his bed was being changed. He was very glad to get back into bed after his short time up. He has always been a man of few words--but right now he is a man of even fewer.
Woody just had me put lotion on his back as it was itching. When I put my finger tips on his back and took them away it looks just like someone with a bad sunburn--red and where my fingers touched white. Flushing is another of the side effects.
He did eat some vanilla ice cream this afternoon--the first food he has tolerated in a while.
We did learn today that he is the only patient here at the moment having IL-2. Also learned that IL-2 is something that we have naturally in our bodies--it is what makes us feel the way we do when we have the flu--so Woody is being given flu-like feelings multiplied many, many times over. We were told that this treatment is the roughest given here--and that speaks volumes since we are in the cancer unit.
We're still working on getting some of his meds down him today. He is very nauseated--so rather hard for him to swallow six or seven pills. He has taken the essential ones and will take the others when he thinks he can. He has had some meds for nausea so hope that they help. He did get unhooked from his IV pole for a while prior to this last treatment. He got up and sat in a chair and checked a couple of things on the computer while his bed was being changed. He was very glad to get back into bed after his short time up. He has always been a man of few words--but right now he is a man of even fewer.
Woody just had me put lotion on his back as it was itching. When I put my finger tips on his back and took them away it looks just like someone with a bad sunburn--red and where my fingers touched white. Flushing is another of the side effects.
He did eat some vanilla ice cream this afternoon--the first food he has tolerated in a while.
Descending...7...6...
Just moments ago Woody started on his 8th IL-2 infusion...so "just" six to go! He's hanging in there by God's grace. He has told me that he can't imagine coming back for more of this in a week and a half--and I can understand. All of the medical staff continue to say how great he is doing--hopefully that encourages him. Woody did tell me a few minutes ago that he feels like the IL-2 is working--so he is thinking postively. Every time another one of these treatments starts, I pray that it be directed to the place in his body that needs it most.
At least during this five day stay there are less infusions left to take than he has already taken. He truthfully doesn't have much more than an once of energy--definitely a feeling that he isn't used to having. He still has strength and doesn't have trouble sitting up or standing up or walking--but only does any of those when an absolute need arises.
I slept well last night. Woody did awaken me several times to help him, but I was able to go right back to sleep. I don't think that Woody slept as well last night as he did yesterday afternoon--but at least he is getting good rest at some time during the day/night. He seems to be resting peacefully right now.
Oh, and to show you that he isn't confused yet...at 2:50 this morning he wished me a Happy Valentine's Day!
At least during this five day stay there are less infusions left to take than he has already taken. He truthfully doesn't have much more than an once of energy--definitely a feeling that he isn't used to having. He still has strength and doesn't have trouble sitting up or standing up or walking--but only does any of those when an absolute need arises.
I slept well last night. Woody did awaken me several times to help him, but I was able to go right back to sleep. I don't think that Woody slept as well last night as he did yesterday afternoon--but at least he is getting good rest at some time during the day/night. He seems to be resting peacefully right now.
Oh, and to show you that he isn't confused yet...at 2:50 this morning he wished me a Happy Valentine's Day!
Friday, February 13, 2009
8 to go!
He slept soundly through his sixth IL-2 infusion. He asked shortly after it finished if it was finished and then he went back to sleep and slept most of the afternoon--what seemed like a very deep, good sleep. He did feel a bit nauseated after he woke up, but I called the nurse and she got him his nausea medication and so far it is working.
Prior to his sixth infusion the doctor asked Woody to describe how he was feeling. Woody said "malaise." And I think that pretty well sums it up--but doubt that that is an answer the doctor gets very often--a one word summary! Definitely a Woody answer! I think that he is still in his right mind!
Again, all the doctors keep telling us how well he is doing. But the doctor who is in charge for the rest of the weekend told him today, not to feel badly if he can't take all fourteen of the treatments--that many can't--which we know--but probably good to keep being told that! Today prior to his sixth infusion, the doctor told him to remember that at any time that treatments get too much for him he can stop them--another good thing for him to hear at this point.
Tonight's 7th and the half-way point infusion is when they will start doing lab work prior to each infusion from now on--I misunderstood the nurse this morning. They really have to monitor him from now on--this is getting to the point when organs and other body systems can be compromised.
Prior to his sixth infusion the doctor asked Woody to describe how he was feeling. Woody said "malaise." And I think that pretty well sums it up--but doubt that that is an answer the doctor gets very often--a one word summary! Definitely a Woody answer! I think that he is still in his right mind!
Again, all the doctors keep telling us how well he is doing. But the doctor who is in charge for the rest of the weekend told him today, not to feel badly if he can't take all fourteen of the treatments--that many can't--which we know--but probably good to keep being told that! Today prior to his sixth infusion, the doctor told him to remember that at any time that treatments get too much for him he can stop them--another good thing for him to hear at this point.
Tonight's 7th and the half-way point infusion is when they will start doing lab work prior to each infusion from now on--I misunderstood the nurse this morning. They really have to monitor him from now on--this is getting to the point when organs and other body systems can be compromised.
Countdown is on...10, 9...
He just finished his fifth infusion. He had a rough night after his fourth. He said this morning prior to starting the fifth that it seems like the side effects in the night are the worse. I don't know--it could just be that they are now building on each other.
He did have one time of tremors in the night, but they were less than they had been in the afternoon. This is really rough stuff--which we knew before he started. His attitude is great. And all the staff keep assuring us how great he is doing--despite how badly he is feeling. It is so good that he came into this with such a strong body--despite the broken arm and the melanoma.
Protocol changes with the next infusion. He has to have lab work done prior to starting infusions from that time (2pm Feb. 13) on--and results have to be back prior to them starting each infusion after this one (6am Feb 13). They had to give him sodium bicarbonate prior to his infusion this morning as labs showed that low. They are keeping close watch over everything.
He is staying very calm throughout this whole process--even when he is sickest--and even when he is wishing that it wasn't time for the next dose.
I will continue the countdown in the next post--or perhaps spin a tale about the food service!
He did have one time of tremors in the night, but they were less than they had been in the afternoon. This is really rough stuff--which we knew before he started. His attitude is great. And all the staff keep assuring us how great he is doing--despite how badly he is feeling. It is so good that he came into this with such a strong body--despite the broken arm and the melanoma.
Protocol changes with the next infusion. He has to have lab work done prior to starting infusions from that time (2pm Feb. 13) on--and results have to be back prior to them starting each infusion after this one (6am Feb 13). They had to give him sodium bicarbonate prior to his infusion this morning as labs showed that low. They are keeping close watch over everything.
He is staying very calm throughout this whole process--even when he is sickest--and even when he is wishing that it wasn't time for the next dose.
I will continue the countdown in the next post--or perhaps spin a tale about the food service!
Thursday, February 12, 2009
11 to go
His 2pm IL-2 treatment has hit him the hardest so far--which is the way it is supposed to go. The afternoon Care Partner said that it is good for him to not feel good--as "they" say that's when the drug is working.
He had a really bad time with body tremors not long after the infusion was finished--a lot like an earthquake--seriously! The whole bed was shaking. This lasted for close to three quarters of an hour. He did take a medication to make them subside, but it took quite a while for it to stop his shaking. Then this evening he has felt nauseated--so supper didn't appeal. He has just wanted sips of water for several hours now. He did eat a pretty good breakfast and lunch, though. He has slept off and on during the afternoon. And that was one of the things that he hoped coming into this treatment--that he would sleep through a lot of it--and he has today.
Pray that his fever doesn't go up any higher--it was 99.8 and the Care Partner said: "now don't go any higher." So I don't know if 100 is a magic number for something in this treatment or not.
Our little corner of the hospital is really quite quiet. There is another room next to ours and these two rooms are behind doors--so we don't hear the nurses station and all the other comings and goings. That is sort of nice. The main noise is the vital sign monitor--and that is constantly beeping--or so it seems. That is a hard noise to sleep through! Hope that it behaves tonight and keeps quiet--oh, I guess it is Woody that needs to behave--as it is his vital signs that are making it go off--but it must not be anything that they are concerned about as they don't come running!
I haven't strayed too far from the room as I'm never sure when Woody will need me. I
am keeping occupied with the computer, reading, needlework, dozing, etc. I brought plenty to occupy any free time that I may have. And, those who were concerned about me eating--have no worries--between the food that I brought with us and what Woody doesn't eat--I am not going hungry! For lunch they brought him vegetable soup and chicken and dumplings--well, he does not like dumplings--so he ate the soup and the rest of the things on the tray and gladly gave me the chicken and dumplings!
So we are now counting down to the next treatment at 10pm--that seems to be what one does around here--count the time between vital sign readings, meals, meds, infusions, when a nurse will respond, etc!
He had a really bad time with body tremors not long after the infusion was finished--a lot like an earthquake--seriously! The whole bed was shaking. This lasted for close to three quarters of an hour. He did take a medication to make them subside, but it took quite a while for it to stop his shaking. Then this evening he has felt nauseated--so supper didn't appeal. He has just wanted sips of water for several hours now. He did eat a pretty good breakfast and lunch, though. He has slept off and on during the afternoon. And that was one of the things that he hoped coming into this treatment--that he would sleep through a lot of it--and he has today.
Pray that his fever doesn't go up any higher--it was 99.8 and the Care Partner said: "now don't go any higher." So I don't know if 100 is a magic number for something in this treatment or not.
Our little corner of the hospital is really quite quiet. There is another room next to ours and these two rooms are behind doors--so we don't hear the nurses station and all the other comings and goings. That is sort of nice. The main noise is the vital sign monitor--and that is constantly beeping--or so it seems. That is a hard noise to sleep through! Hope that it behaves tonight and keeps quiet--oh, I guess it is Woody that needs to behave--as it is his vital signs that are making it go off--but it must not be anything that they are concerned about as they don't come running!
I haven't strayed too far from the room as I'm never sure when Woody will need me. I
am keeping occupied with the computer, reading, needlework, dozing, etc. I brought plenty to occupy any free time that I may have. And, those who were concerned about me eating--have no worries--between the food that I brought with us and what Woody doesn't eat--I am not going hungry! For lunch they brought him vegetable soup and chicken and dumplings--well, he does not like dumplings--so he ate the soup and the rest of the things on the tray and gladly gave me the chicken and dumplings!
So we are now counting down to the next treatment at 10pm--that seems to be what one does around here--count the time between vital sign readings, meals, meds, infusions, when a nurse will respond, etc!
Two down and...
Well, he has taken two doses of IL-2 and "just" has 12 to go. He has done quite well so far. He had some nausea shortly after the first dose, which was eased quickly with an anti-nausea med. I believe that he has some flushing--another side effect.
His attending physician and underlings have just been in. They are pleased with his progress so far...but...they do say that the side effects build with each dose. After I just typed that last sentence, he asked me to cover him as he was getting cold--he had been sitting up on the side of the bed since the doctors had left--so we both just thought that it was just from the "cool" air that seems to be blowing through the room. But shortly after that he started shaking rather strongly--another of the IL-2 side effects. We called a nurse, but by the time she got here (she took a bit longer than usual), the "shakes" were under control and Woody was resting again. There are meds to help control the "shakes" too--but he didn't take any this time.
His breakfast has arrived. Earlier he said that he was hungry and ready for breakfast--but, when it got here, he was still trying to get warm and wasn't much interested in moving in order to eat!
And...there you have...the first update after the start of Woody's Interleukin 2 treatments.
As an aside--here at Vandy it seems that I can receive email, but can't send--so I'll be communicating through the blog.
His attending physician and underlings have just been in. They are pleased with his progress so far...but...they do say that the side effects build with each dose. After I just typed that last sentence, he asked me to cover him as he was getting cold--he had been sitting up on the side of the bed since the doctors had left--so we both just thought that it was just from the "cool" air that seems to be blowing through the room. But shortly after that he started shaking rather strongly--another of the IL-2 side effects. We called a nurse, but by the time she got here (she took a bit longer than usual), the "shakes" were under control and Woody was resting again. There are meds to help control the "shakes" too--but he didn't take any this time.
His breakfast has arrived. Earlier he said that he was hungry and ready for breakfast--but, when it got here, he was still trying to get warm and wasn't much interested in moving in order to eat!
And...there you have...the first update after the start of Woody's Interleukin 2 treatments.
As an aside--here at Vandy it seems that I can receive email, but can't send--so I'll be communicating through the blog.
Wednesday, February 11, 2009
A room with two views
Woody got taken to a room a little after 3pm. His room is on the 11th floor--the top floor. We are in a corner room so have a northern view and an eastern view. Quite nice--very pretty at night to look out at Nashville's city lights. He is trying to decide whether to liken his room to a penthouse or an attic! The nurse said that we are very close to the helipad--so we may hear helicopter noises at times.
Of course our trip here was a bit harrowing, as we were traveling just as the storm was approaching. Woody helped us make the decision to stop at Melany's in Murfreesboro and wait for the storm line to pass. Which was definitely the right decision. It was still raining pretty hard when we started out again, but it soon quit and then it was just winds to contend with. We were just a bit late for his appointed time for getting the pic line--but once we got here everything got underway very quickly. Melany accompanied her daddy when he was having the line put in. Once we got into the room, she and I went back to the car to get our suitcase, etc. So we have moved in! Melany left for home around 4pm so she could miss Nashville rush hour. All medical personnel have been nice to all of us and are eager to let us ask questions and then answer them. Quite a few have passed through the room asking questions--from students to RN's to doctors. He is assigned to an attending physician and also a Fellow--and then lots of other ducklings following behind. I guess we have something to look forward to when they all file in to see Woody early in the morning. One of the medical student's father is a professor at UTSI.
Woody actually thought that the hospital supper was good and enjoyed his meal. He is now hooked to all kinds of wires checking his vital signs. He also has a new best friend, the IV pole. His nurse suggested that he name his new best friend!
He is all set to start his first IL-2 infusion at 10 pm. They will start taking vital signs around 9:30 and checking him prior to giving him his first dose of IL-2. Then after the first infusion they will be checking him every two hours--hmmmmmm sounds like not much time for sleeping.
Of course our trip here was a bit harrowing, as we were traveling just as the storm was approaching. Woody helped us make the decision to stop at Melany's in Murfreesboro and wait for the storm line to pass. Which was definitely the right decision. It was still raining pretty hard when we started out again, but it soon quit and then it was just winds to contend with. We were just a bit late for his appointed time for getting the pic line--but once we got here everything got underway very quickly. Melany accompanied her daddy when he was having the line put in. Once we got into the room, she and I went back to the car to get our suitcase, etc. So we have moved in! Melany left for home around 4pm so she could miss Nashville rush hour. All medical personnel have been nice to all of us and are eager to let us ask questions and then answer them. Quite a few have passed through the room asking questions--from students to RN's to doctors. He is assigned to an attending physician and also a Fellow--and then lots of other ducklings following behind. I guess we have something to look forward to when they all file in to see Woody early in the morning. One of the medical student's father is a professor at UTSI.
Woody actually thought that the hospital supper was good and enjoyed his meal. He is now hooked to all kinds of wires checking his vital signs. He also has a new best friend, the IV pole. His nurse suggested that he name his new best friend!
He is all set to start his first IL-2 infusion at 10 pm. They will start taking vital signs around 9:30 and checking him prior to giving him his first dose of IL-2. Then after the first infusion they will be checking him every two hours--hmmmmmm sounds like not much time for sleeping.
Tuesday, February 10, 2009
All systems go!
We have just returned from another grueling day at Vanderbilt, but Woody has passed all hurdles and it looks like he is good to go--no show stoppers--at least to this point!
After I posted yesterday, Dr. Sosman called us and asked some questions--like had Woody had this test and that test, etc. So this morning Dr. Sosman had his nurse schedule the tests that Woody needed. We pulled out of our driveway at 12:30pm and didn't pull back in till 8:30pm. Woody had an MRI of his brain and also a CT scan and lab work done. A prayer was answered when the scan of his brain didn't show any tumors. Also the CT scan showed what it had shown before--areas in his upper chest--but didn't show new areas--another PRAISE!
Dr. Sosman was very pleased with how well Woody had healed from his upper arm surgery. He said that this was as close to a surgery as he had ever scheduled an IL-2 treatment.
Woody is to report to radiology at Vanderbilt tomorrow (Feb. 11th) at 1pm for a pic line. Then he will be admitted. He will have his first Interleukin 2 infusion around 10pm. Those infusions take about 15 min. Dr. Sosman was very positive in all he told us today--for each possible side effect he said that there was something that would help lessen the side effect. He said that it just takes a couple of tries to find out what works best for each patient. Woody will be watched very closely for show stoppers.
After I posted yesterday, Dr. Sosman called us and asked some questions--like had Woody had this test and that test, etc. So this morning Dr. Sosman had his nurse schedule the tests that Woody needed. We pulled out of our driveway at 12:30pm and didn't pull back in till 8:30pm. Woody had an MRI of his brain and also a CT scan and lab work done. A prayer was answered when the scan of his brain didn't show any tumors. Also the CT scan showed what it had shown before--areas in his upper chest--but didn't show new areas--another PRAISE!
Dr. Sosman was very pleased with how well Woody had healed from his upper arm surgery. He said that this was as close to a surgery as he had ever scheduled an IL-2 treatment.
Woody is to report to radiology at Vanderbilt tomorrow (Feb. 11th) at 1pm for a pic line. Then he will be admitted. He will have his first Interleukin 2 infusion around 10pm. Those infusions take about 15 min. Dr. Sosman was very positive in all he told us today--for each possible side effect he said that there was something that would help lessen the side effect. He said that it just takes a couple of tries to find out what works best for each patient. Woody will be watched very closely for show stoppers.
Monday, February 9, 2009
There were 28!
Woody had 28 staples removed this morning. And I think that he was surprised at how easily and almost painlessly they came out. We got to Vandy a little early and they called us in early. His staples were out before his appointment time. Dr. Holt was pleased with the way the incision is healing. She also showed us the x-ray that they took of his lower arm while he was in the hospital following his surgery. She said that there is no indication of cancer in this area. It is just a very bad break caused by the trauma of his bicycle accident. She also gave him orders so he can start going to physical therapy for his shoulder here in Tullahoma as soon as he is "over" his IL-2 treatments. She did say that Woody would have to have radiation on his shoulder and that she would consult with Dr. Sosman about the timing for starting it.
Woody's half cast has been bothering him. Dr. Holt sent us to occupational therapy and they made him a new molded half cast that frees up his thumb and fingers more and is attached with Velcro rather than an ace bandage. We are hoping that this alleviates some of his pain.
Finally a trip to Vanderbilt that didn't take an entire day!
We will be going back to Vanderbilt tomorrow for a late afternoon appointment with Dr. Sosman and have lab work, etc. done prior to Woody entering Vanderbilt hospital Wednesday.
We got a call from Dr. Sosman's IL-2 scheduling nurse this afternoon after we got home. Woody will be reporting to radiology on Wednesday around 1pm to have a port put in that he will receive IL-2 through. After that he will be admitted to the hospital. He is scheduled to have his first IL-2 infusion at 10pm Wednesday.
Woody, again, didn't sleep well last night. Dr. Holt did prescribe more pain medication so he will see if that helps his pain and aids his sleep tonight.
Woody's half cast has been bothering him. Dr. Holt sent us to occupational therapy and they made him a new molded half cast that frees up his thumb and fingers more and is attached with Velcro rather than an ace bandage. We are hoping that this alleviates some of his pain.
Finally a trip to Vanderbilt that didn't take an entire day!
We will be going back to Vanderbilt tomorrow for a late afternoon appointment with Dr. Sosman and have lab work, etc. done prior to Woody entering Vanderbilt hospital Wednesday.
We got a call from Dr. Sosman's IL-2 scheduling nurse this afternoon after we got home. Woody will be reporting to radiology on Wednesday around 1pm to have a port put in that he will receive IL-2 through. After that he will be admitted to the hospital. He is scheduled to have his first IL-2 infusion at 10pm Wednesday.
Woody, again, didn't sleep well last night. Dr. Holt did prescribe more pain medication so he will see if that helps his pain and aids his sleep tonight.
Sunday, February 8, 2009
PRAYER
As many of you know, Woody is a man of prayer. He just gave up leadership after several years of the Monday Night Prayer Meeting at our church. Also he is currently chairman of the Deacon Hospital Visitation Team of which he has been a part for many years.
When he visits the sick, more often than not he prays something like:
In addition, if Woody knows the person has cancer, he'll include something like the following:
Woody says that he has prayed those prayers a time or two for himself, but basically his prayer is for God's will to be done. He also is praying that God will draw him closer to God and grow his character through this experience.
So I am soliciting your prayers. First for me, as I have health problems of my own; and all this is putting a lot of stress on me. Pray that I have the strength to help Woody in the ways that he needs to be helped and that my "ailments" stay at bay.
Secondly, pray for Woody--primarily that he will be healed. His attitude and spiritual condition are good. But he is in quite a bit of pain and has almost no use of his left arm and hand. I am specifically praying for a miracle for Woody.
If you don't know what to pray--pray one of the prayers that Woody often prays for others.
As we approach these treatments, please pray that there won't be any show stoppers to keep him from beginning these treatments and that he'll have the strength and perseverance to make it through the first set of treatments (14 infusions in 5 days in the hospital, 7 days home, then 14 infusions in 5 days in the hospital again). And that his immune system will be able to defeat the melanoma.
Today he still seems to be recovering from the effects of his Zometa infusion. In some ways I wish that he hadn't had this infusion so close to his IL2 treatments. He was starting to show that he was regaining his strength after his surgery and ever since the infusion he seems to have lost ground. Again, he didn't sleep well last night since he had slept so much during the day. He is hoping for a good night's sleep tonight. Tomorrow we will be going back to see Dr. Holt for his post-op visit and to get the MANY staples removed. The latter he is dreading!
When he visits the sick, more often than not he prays something like:
Almighty Heavenly Father, what a Mighty God you are. There is nothing you can't do--no sickness you can't heal, no miracle you can't perform, no problem you can't solve, no sin you can't forgive, no need you can't provide for, no life you can't revitalize. Lord, your Word says that even youth grow tired and weary, young men stumble and fall, but they that put their faith in you shall renew their strength, and they shall soar on wings like eagles, they shall run and not be weary, they shall walk and not faint. Lord, we know ____ put their faith in you a long time ago and we know that once again you're going to restore him/her. And that's what we pray for--that you would heal him/her in accord with your will. And help them to feel your presence. Give them strength and perseverance and help him/her to know that we love him/her. In Jesus' name, Amen.
In addition, if Woody knows the person has cancer, he'll include something like the following:
Lord, in your infinite wisdom you knit ____ together in his/her mother's womb. And every cell was designed to perform a specific function so that he/she could properly glorify You. Lord, we ask that You would restore ____ so that once again every cell in his/her body performs the function it was designed to do. And if there is any cell that is in his/her body that is not part of your infinite plan--that it would be removed--by whatever means necessary so that ____can once again glorify You properly.
Woody says that he has prayed those prayers a time or two for himself, but basically his prayer is for God's will to be done. He also is praying that God will draw him closer to God and grow his character through this experience.
So I am soliciting your prayers. First for me, as I have health problems of my own; and all this is putting a lot of stress on me. Pray that I have the strength to help Woody in the ways that he needs to be helped and that my "ailments" stay at bay.
Secondly, pray for Woody--primarily that he will be healed. His attitude and spiritual condition are good. But he is in quite a bit of pain and has almost no use of his left arm and hand. I am specifically praying for a miracle for Woody.
If you don't know what to pray--pray one of the prayers that Woody often prays for others.
As we approach these treatments, please pray that there won't be any show stoppers to keep him from beginning these treatments and that he'll have the strength and perseverance to make it through the first set of treatments (14 infusions in 5 days in the hospital, 7 days home, then 14 infusions in 5 days in the hospital again). And that his immune system will be able to defeat the melanoma.
Today he still seems to be recovering from the effects of his Zometa infusion. In some ways I wish that he hadn't had this infusion so close to his IL2 treatments. He was starting to show that he was regaining his strength after his surgery and ever since the infusion he seems to have lost ground. Again, he didn't sleep well last night since he had slept so much during the day. He is hoping for a good night's sleep tonight. Tomorrow we will be going back to see Dr. Holt for his post-op visit and to get the MANY staples removed. The latter he is dreading!
Saturday, February 7, 2009
And the winning question is...
"What's your favorite baseball team?"
Woody said that if he couldn't remember the answer to that question, then he was definitely confused!
Today has been much better for Woody, if you compare it to yesterday! Our nephew, Jason, from St. Louis is here visiting. He is staying next door with Nathan and family. The day was so spring-like that Woody and Jason went on a walk this morning. They walked for about 45 min. Woody said that it felt good while they were walking, but in retrospect he is wondering if maybe he should have taken a shorter walk. After his walk, he slept again for a good part of the day. He says that he is getting his days and nights mixed up since the Zometa infusion. After sleeping most of yesterday, he had trouble sleeping last night. That may be the direction he is heading tonight!
Melany and her family came to Tullahoma to visit with Jason. They spent most of their time over at Nathan's, but did come over for a short visit with us late in the afternoon. We're trying to keep visits with Woody fairly quiet and not too long--but he did wake up enough to visit with them.
So we have had a bit of a family reunion today, but we let the younger generations mainly take part in it. It was good to see everyone together and not have any responsibility!
Friday, February 6, 2009
Precursor of what's to come?
The side effects of the Zometa started in the night for Woody and have lasted a good part of the day. He has had aches, chills, trembles, and sweats--not a good day to say the least. He did manage to sleep away some of the day. Late this afternoon he started to feel a bit better, but hasn't felt like doing much except stay in his recliner all wrapped up in fleece throws. He hasn't had much of an appetite for most of the day, but was ready to eat when supper time came around.
I asked him if he wanted to take a fleece throw with him. He asked me where he was going to take it. I said to the hospital next week. He said that he was having second thoughts about the hospital! And I can understand why--I have a feeling that the last few hours have been mild in comparison to what he will experience next week.
I asked him if he wanted to take a fleece throw with him. He asked me where he was going to take it. I said to the hospital next week. He said that he was having second thoughts about the hospital! And I can understand why--I have a feeling that the last few hours have been mild in comparison to what he will experience next week.
Thursday, February 5, 2009
First Zometa infusion
Woody had his first Zometa infusion this morning. We got up early and headed out into the cold for Murfreesboro. Woody drove for the first time since his surgery. He said that the infusion wasn't bad. It took about 30 minutes. They told him that he wouldn't realize that he had had the treatment till tomorrow. Tomorrow he is going to ache like he has the flu. What this treatment does is take calcium from the blood and then puts that calcium into his bones. This will make his bones ache--thus the achy flu-like feeling.
He will be having these infusions about once a month and he found out that in the future he should be able to have this done in Tullahoma which will save us a 90 mile round trip.
After we got home, we had lunch and then we both napped a bit this afternoon.
He will be having these infusions about once a month and he found out that in the future he should be able to have this done in Tullahoma which will save us a 90 mile round trip.
After we got home, we had lunch and then we both napped a bit this afternoon.
Wednesday, February 4, 2009
Suggestions needed!
One of the reasons that I am supposed to accompany Woody during these treatments is because they need to know if he is in his right mind--and a nurse is not necessarily the best person to do that. Woody has decided that we need some questions that I can ask him to decide if he is confused or not during his treatments. He suggested something like they do when a ball player gets knocked out and they are trying to decide if he has a concussion or not--like "how many fingers am I holding up?" or "what year is it?" or "who is the President?"
We have come up with one question that I cannot ask him as neither of us can agree on the answer--and that is: What time did Woody ask me to marry him? He says one time and I say another. He says that I am wrong and I know that he is wrong! So that is definitely not a good question!
So...any suggestions?
Woody has used up all of his post-operative pain medication. Now during the day he is taking ibuprofen and at night will take the stronger pain medication that Dr. Sosman prescribed for him prior to his surgery. He has had a restful day staying in and trying to stay warm.
We have come up with one question that I cannot ask him as neither of us can agree on the answer--and that is: What time did Woody ask me to marry him? He says one time and I say another. He says that I am wrong and I know that he is wrong! So that is definitely not a good question!
So...any suggestions?
Woody has used up all of his post-operative pain medication. Now during the day he is taking ibuprofen and at night will take the stronger pain medication that Dr. Sosman prescribed for him prior to his surgery. He has had a restful day staying in and trying to stay warm.
Tuesday, February 3, 2009
Tuesday update
Woody has had another quiet day--not much happening--it's good to have days like these--lately quiet days have been far and few between. He did walk to the library this morning. He spent the rest of the day resting. He took a good nap this afternoon. It looks like those prayers for him to get some good sleep are working!
Some really cold days and nights are predicted for the next couple of days so Woody's exercise may be confined to inside the house--walking up and down the stairs or to the refrigerator! For my AZ family and friends and others who are in warm climates--it is 14 degrees here at the moment and not supposed to get out of the 20's tomorrow. I am already dreading having to get out in the extreme cold early Thursday morning when we have to be in Murfreesboro by 9am for his first Zometa infusion. I know...I shouldn't be thinking past today...but...brrrrrrrrrr!
Some really cold days and nights are predicted for the next couple of days so Woody's exercise may be confined to inside the house--walking up and down the stairs or to the refrigerator! For my AZ family and friends and others who are in warm climates--it is 14 degrees here at the moment and not supposed to get out of the 20's tomorrow. I am already dreading having to get out in the extreme cold early Thursday morning when we have to be in Murfreesboro by 9am for his first Zometa infusion. I know...I shouldn't be thinking past today...but...brrrrrrrrrr!
Monday, February 2, 2009
Monday, Monday!
It has been a status quo day for Woody. He was going to go for a walk, but it was just a might too cold--especially with the breeze. He spent a lot of time resting which should be good for what ails him!
Sunday, February 1, 2009
Therapy frustrations
Woody is rather frustrated with his efforts when he attempts to do his new physical therapy exercises. We were shown at Vanderbilt what exercises he is to do, but we just aren't sure that he is doing them correctly. And he knows that he needs to be doing them correctly or they won't be doing him any good--and could do harm.
He is also frustrated in the fact that he has lost so much of what he had regained from going to physical therapy after his bicycle accident. He is working very hard to get the use of his hand back to what he had prior to having the external fixture removed from his arm and hand. He also had been able to straighten and bend his elbow almost all the way and he has lost some of that movement--a bit discouraging to have worked so hard to gain movement of his hand and arm to lose it again so quickly.
We just feel like he needs the expertise of a trained physical therapist to guide him in doing the exercises correctly. He went two to three times a week from October to the end of December and they taught him exactly how to do the exercises. This time we were shown twice--and shown different exercises at each of those times. We just don't want his shoulder to freeze up again! We thought that they were going to set up outside physical therapy, but we haven't heard anything and we are wondering if that will wait till after his treatments--since they are only a week and a half away. Perhaps time to email Dr. Holt again!
Woody has been in more pain today as he is trying to go from two pain pills down to one. He did take about an hour walk on this beautiful day. He didn't go to church or teach his Sunday School class this morning as he is trying to stay healthy and not pick up any bugs prior to starting his treatments on February 11th. He is resting now and looking forward to watching the Super Bowl.
He is also frustrated in the fact that he has lost so much of what he had regained from going to physical therapy after his bicycle accident. He is working very hard to get the use of his hand back to what he had prior to having the external fixture removed from his arm and hand. He also had been able to straighten and bend his elbow almost all the way and he has lost some of that movement--a bit discouraging to have worked so hard to gain movement of his hand and arm to lose it again so quickly.
We just feel like he needs the expertise of a trained physical therapist to guide him in doing the exercises correctly. He went two to three times a week from October to the end of December and they taught him exactly how to do the exercises. This time we were shown twice--and shown different exercises at each of those times. We just don't want his shoulder to freeze up again! We thought that they were going to set up outside physical therapy, but we haven't heard anything and we are wondering if that will wait till after his treatments--since they are only a week and a half away. Perhaps time to email Dr. Holt again!
Woody has been in more pain today as he is trying to go from two pain pills down to one. He did take about an hour walk on this beautiful day. He didn't go to church or teach his Sunday School class this morning as he is trying to stay healthy and not pick up any bugs prior to starting his treatments on February 11th. He is resting now and looking forward to watching the Super Bowl.
Subscribe to:
Posts (Atom)