It's Saturday, I have been home for almost a week. I feel marginal. I have lost 40 pounds since Sunday. Looking forward to feeling great soon!
Tuesday Dr. Margolin called and explained to me that she did not want me to have anymore IL 2 treatment. She feels the risk of me having more cardiac complications is too high. I figured that would be her opinion. I have to say, I was both relieved and saddened by this news. IL 2 treatment is awful but it worked for me. I feel like my best treatment has been taken off the table. It probably sounds strange.
I now have a cardiologist! After my most recent episode at the UWMC, a cardiac follow up was recommended. Thursday Kelly and I met with cardiologist Dr. Beglin. He reviewed my medical history and expressed his desire to help me treat my cancer most effectively. Dr. Beglin performed his exam and viewed an electrocardiogram(ECG) of my heart. Based on what he saw there he ordered an echocardiogram. He explained that he wanted it done soon so that he could give results as soon as possible. So, later that day, we came back for my echo. This test takes about a half an hour, no big deal. Apparently, I had an echo in the hospital in November. This is just another thing I don't remember.
Dr. Beglin called yesterday afternoons to let me know what the echo revealed. He explained to me that my heart function looks totally normal but there's just one thing....
There is some inflammation around the lining of my heart, the pericardium. This isn't surprising, this lining responds to the IL 2 like the rest of my body. However, Dr. Beglin explained, the are 1 or 2 spots that he can't see very well on the echo. To get a more detailed view he would like an MRI of my heart.
So, sometime next week (hopefully) I will have an MRI of my heart. Most likely, these small lesions are just inflammation from my treatment. There is a possibility that they could be cancer. Great! Lesions around the heart aren't detectable on a PET scan because of the way that scan works.
Today is a beautiful, sunny day! My sisters are coming up to visit for the afternoon! I have more to be thankful for than to complain about!
Until next time....
Saturday, February 11, 2012
Monday, February 6, 2012
Exhausted!
I am so glad to be home. Rested on the couch all last night. Kelly unloaded the car and did all the laundry. We watched the Superbowl, me mostly with my eyes closed.
I didn't sleep well, unfortunateley, That's ok because I am only going to sleep today, right?
Kelly has planned to go golfing with some friends. It's a beauriful day! I am, not surprisingly, emotional and very tired. But, I am happy and prepared to hang out at home. I take my morning lasix and potassium, to help push off excess water. Kelly suggests I take a couple Ativan to help with me settle down. So I do. However Kelly quickly realizes that I probably should not be home alone. I accidentally took 2 more lasix, while not life threatenening, are sure sign that I am out of it. Now I feel even worse. For those of you that don't already know, Kelly is a saint, as least he is for me;)
We have an appoitment with cardiologist on Thursday to evaluate my heart thouroughly. I am interested to see what they discover. We are scheduled to go back to the UW next Monday to start the 2nd cycle unless the cardiologist and/or Dr. Margolin feel the risks of further cardiac incidents outweigh the benefits of the IL 2 treatment.
It's the limbo!
Feeling pretty good now. Just big and tired!!
Heather
I didn't sleep well, unfortunateley, That's ok because I am only going to sleep today, right?
Kelly has planned to go golfing with some friends. It's a beauriful day! I am, not surprisingly, emotional and very tired. But, I am happy and prepared to hang out at home. I take my morning lasix and potassium, to help push off excess water. Kelly suggests I take a couple Ativan to help with me settle down. So I do. However Kelly quickly realizes that I probably should not be home alone. I accidentally took 2 more lasix, while not life threatenening, are sure sign that I am out of it. Now I feel even worse. For those of you that don't already know, Kelly is a saint, as least he is for me;)
We have an appoitment with cardiologist on Thursday to evaluate my heart thouroughly. I am interested to see what they discover. We are scheduled to go back to the UW next Monday to start the 2nd cycle unless the cardiologist and/or Dr. Margolin feel the risks of further cardiac incidents outweigh the benefits of the IL 2 treatment.
It's the limbo!
Feeling pretty good now. Just big and tired!!
Heather
Sunday, February 5, 2012
Surprise!!!
Heather had a tough time sleeping last night. She developed an expiratory wheeze in her throat, that medically was no big deal, but it was so noisy that it was keeping her awake.
That's the bad news. She did manage to get a few hours of sleep, and her vitals stayed very stable through the night. We got up around 8:00 and the barrage of good news began!!
Heather had a repeat swab of her nose done on Friday to recheck for MRSA. Results this morning... negative! The PA came in shortly after and said things were looking pretty good and that we were probably going to be able to go home tomorrow. Not ideal, but still good news.
Next, came the nurse to unhook all the IV lines, BP cuff, EKG lines, etc. because Heather was being upgraded from "ICU" care to "floor" care. More good news. Heather was tired, but felt pretty good, so she decided to take a shower. Not long after finishing her shower, the PA returned with the doctor, and they were both surprised how good she looked. They hardly hesitated before they asked if she felt like she wanted to go home.
Not something Heather had to be asked twice about!!! She is still exhausted, but would much prefer to recover on her couch at home rather than a hospital bed. So, about an hour later, we were in the car and on our way to Bellingham!! I suppose this may come as a bit of bad news to a few of you, because it means no kegger in the ICU. :)
We made it home. Traffic was good, Heather slept all the way and continues to slumber on the couch. The laundry is done, the roasted chicken is on the counter, the super bowl is on, I'm in my PJs, Lola is asleep right next to Heather and the wine glass is full.
So good to be home!!!!
That's the bad news. She did manage to get a few hours of sleep, and her vitals stayed very stable through the night. We got up around 8:00 and the barrage of good news began!!
Heather had a repeat swab of her nose done on Friday to recheck for MRSA. Results this morning... negative! The PA came in shortly after and said things were looking pretty good and that we were probably going to be able to go home tomorrow. Not ideal, but still good news.
Next, came the nurse to unhook all the IV lines, BP cuff, EKG lines, etc. because Heather was being upgraded from "ICU" care to "floor" care. More good news. Heather was tired, but felt pretty good, so she decided to take a shower. Not long after finishing her shower, the PA returned with the doctor, and they were both surprised how good she looked. They hardly hesitated before they asked if she felt like she wanted to go home.
Not something Heather had to be asked twice about!!! She is still exhausted, but would much prefer to recover on her couch at home rather than a hospital bed. So, about an hour later, we were in the car and on our way to Bellingham!! I suppose this may come as a bit of bad news to a few of you, because it means no kegger in the ICU. :)
We made it home. Traffic was good, Heather slept all the way and continues to slumber on the couch. The laundry is done, the roasted chicken is on the counter, the super bowl is on, I'm in my PJs, Lola is asleep right next to Heather and the wine glass is full.
So good to be home!!!!
Saturday, February 4, 2012
Stabilized
Today... Much better. Heather was most understandably exhausted after all she went through yesterday. She managed to sleep pretty well last night and has been dozing in and out today.
She ended up getting quite a bit of IV fluids during the events of yesterday, which led to a fair amount of fluid leaking into her "3rd space." So a lot of extra swelling today. Just more fluid to get rid of before we come back.
So, looks like we may be able to head home tomorrow, however everyone that has come to talk to us today has been suggesting that we are most likely not leaving until Monday.
Heather continues to recover, she has little memory of what went on yesterday, but does remember both the adenosine and getting shocked. She said she doesn't really want to experience either of them anytime in the near future :)
Well, here's to an ICU super bowl party. Not sure if they will let me bring the keg up...
She ended up getting quite a bit of IV fluids during the events of yesterday, which led to a fair amount of fluid leaking into her "3rd space." So a lot of extra swelling today. Just more fluid to get rid of before we come back.
So, looks like we may be able to head home tomorrow, however everyone that has come to talk to us today has been suggesting that we are most likely not leaving until Monday.
Heather continues to recover, she has little memory of what went on yesterday, but does remember both the adenosine and getting shocked. She said she doesn't really want to experience either of them anytime in the near future :)
Well, here's to an ICU super bowl party. Not sure if they will let me bring the keg up...
Friday, February 3, 2012
It couldn't be that easy
After a rough day, Heather finally got the right combination of drugs and managed to get some much needed sleep last night. She did get her 2:00 AM dose overnight, and then got her 10:00 dose this morning. Her side effects had eased off, and she was feeling good (relatively speaking).
Just prior to the doctors coming in this morning, she had a short run of SVT (heart sped up to about 170 beats per minute). This only lasted for about 10 seconds and then settled into a normal rate. The doctors had seen this, and came in and told her that they were going to hold off on her dose at 6:00 this evening, because her heart was beginning to show signs of irritation.
Believe or not, Heather was ok with that decision. It's been a long week and this meant maybe we could be going home tomorrow, or at least by Sunday.
But...
The doctors left the room, she stood up to go to the bathroom and her heart sped up again. By the time she was back from the bathroom, her heart rate was now over 230 beats per minute. Needless to say, this got the attention of everyone. Quickly her room was filled with about 10 doctors, nurses, cardiologists, etc. She remained conscious and talking, but this was a little more serious than our last trip down when her heart sped up.
For the next two hours, Heather was wrung through the wringer. Fortunately, she was pretty sedated. They first tried a drug called Adenosine, which is a very short lived drug that is like a chemical shock to the heart. The idea being to temporarily block the electrical activity in the heart and hope it resets into a regular rhythm. Two tries, no success. Heather, however, got to feel what it would be like to have her heart stop.... Twice.
Well, the chemical shock didn't work... On to electricity. After much more sedation, Heather got to receive two separate electrical shocks to her chest (elctrocardioversion). Unfortunately without success. Heather now has a good idea what it would feel like to be kicked in the chest by a horse..... Twice. :(
Back to drugs. Different drugs this time, a little less dramatic, but typically don't work as quickly as the previous interventions should. The good news, though, is they did work. About three hours after her heart sped up, it slowed back down and became regular again.
No question about the 6:00 IL-2 now, and, no 2:00 AM dose Saturday morning. So she is done with the IL-2 for this trip down. 11/14 doses and a little excitement for the 8NE ICU. Slim chance we may get to leave Saturday. Most likely Sunday, or early Monday.
Glad to have this round pretty much behind us. Looking forward to a week at home for recovery and preparation for the next trip down on February 13.
Just prior to the doctors coming in this morning, she had a short run of SVT (heart sped up to about 170 beats per minute). This only lasted for about 10 seconds and then settled into a normal rate. The doctors had seen this, and came in and told her that they were going to hold off on her dose at 6:00 this evening, because her heart was beginning to show signs of irritation.
Believe or not, Heather was ok with that decision. It's been a long week and this meant maybe we could be going home tomorrow, or at least by Sunday.
But...
The doctors left the room, she stood up to go to the bathroom and her heart sped up again. By the time she was back from the bathroom, her heart rate was now over 230 beats per minute. Needless to say, this got the attention of everyone. Quickly her room was filled with about 10 doctors, nurses, cardiologists, etc. She remained conscious and talking, but this was a little more serious than our last trip down when her heart sped up.
For the next two hours, Heather was wrung through the wringer. Fortunately, she was pretty sedated. They first tried a drug called Adenosine, which is a very short lived drug that is like a chemical shock to the heart. The idea being to temporarily block the electrical activity in the heart and hope it resets into a regular rhythm. Two tries, no success. Heather, however, got to feel what it would be like to have her heart stop.... Twice.
Well, the chemical shock didn't work... On to electricity. After much more sedation, Heather got to receive two separate electrical shocks to her chest (elctrocardioversion). Unfortunately without success. Heather now has a good idea what it would feel like to be kicked in the chest by a horse..... Twice. :(
Back to drugs. Different drugs this time, a little less dramatic, but typically don't work as quickly as the previous interventions should. The good news, though, is they did work. About three hours after her heart sped up, it slowed back down and became regular again.
No question about the 6:00 IL-2 now, and, no 2:00 AM dose Saturday morning. So she is done with the IL-2 for this trip down. 11/14 doses and a little excitement for the 8NE ICU. Slim chance we may get to leave Saturday. Most likely Sunday, or early Monday.
Glad to have this round pretty much behind us. Looking forward to a week at home for recovery and preparation for the next trip down on February 13.
Thursday, February 2, 2012
Oh, I remember you...
Well, Heather had seemingly been breezing through this round as compared to her last two trips down. Despite having to skip her 6th dose due to a low BP, the side effects have been fairly easy to manage thus far. She received her 7th and 8th dose without much trouble, even managed to sleep quite a bit last night.
But...
Today brought on the tirade of side effects. Confusion, hallucinations, itchiness, nausea, and severe abdominal cramping. It's quite apparent that her body has finally recognized the familiar invader...IL-2.
During conversations with the doctors earlier today, I got the feeling that they may offer and even encourage Heather to skip a dose this evening based on the onslaught of side effects she was having. During a lucid moment this afternoon, I broached this possibility with Heather... She looked at me as if I were insane. So once again, in the face of great suffering, Heather says, "Bring it on!!"
Doses 9 and 10 were completed, and her vital signs seem to holding steady enough that she should get her 11th dose at 2:00 in the morning. She's staying strong and nearing the end of this leg.
Thanks for all the thoughts and words of encouragement.
But...
Today brought on the tirade of side effects. Confusion, hallucinations, itchiness, nausea, and severe abdominal cramping. It's quite apparent that her body has finally recognized the familiar invader...IL-2.
During conversations with the doctors earlier today, I got the feeling that they may offer and even encourage Heather to skip a dose this evening based on the onslaught of side effects she was having. During a lucid moment this afternoon, I broached this possibility with Heather... She looked at me as if I were insane. So once again, in the face of great suffering, Heather says, "Bring it on!!"
Doses 9 and 10 were completed, and her vital signs seem to holding steady enough that she should get her 11th dose at 2:00 in the morning. She's staying strong and nearing the end of this leg.
Thanks for all the thoughts and words of encouragement.
Wednesday, February 1, 2012
MRSA. The new four letter word.
Everyone who gets admitted to the hospital has to run a little swab in their nose, which is then sent to the lab and cultured to see if it contains MRSA. Heather did this when we checked in on Monday and we found out that she actually brought some MRSA in to the hospital.
Initially sounds scary, until you step back and realize that MRSA is everywhere. I'm sure I brought some in too. I've heard of studies that have shown recliners in fire halls are ripe with the stuff. It's on everything we touch, which is why hand-washing is such a good idea.
Well, that was easy for me to wrap my brain around, but mine is not clouded with IL-2, Demerol, Ativan, etc. Poor Heather thought this meant the end, not that she was sick with some infection, but that they were going to end her treatment and essentially kick us out. Not the case, but not an easy thing to convince her of. Truly, the only reason the nurse told her was to help explain why everyone now had to wear a yellow robe around her. Yep, including me. Yellow robe when in the room, take it off when I leave. (Is it like a kilt? Do I have to wear anything under it?)
Well, we finally convinced her that it really was no big deal. She even gets to wear a "Fancy" yellow robe when she leaves the room for a little walk through the halls. Phheeewwww!!!!
She made it through the night pretty well after that. She received her 5th dose at 2:00 AM, and even managed a few hours of sleep. Then, took the news really well at about 9:00 when she was told that she wasn't going to get the 6th dose at 10:00. BP too low, but being supported well by the Neo.
Other than trying to keep from crawling out of her skin, fairly relaxing day, which will typically lower most people's BP, but Heather managed to raise hers. Last one was 103/62 and she is on a low dose of the pressor, so.... the good news.... more IL-2 at 6:00!!! Back on schedule. Yippee!
Looking forward to hitting the half way point of this trip. 6/7 doses down, 7 left!
Initially sounds scary, until you step back and realize that MRSA is everywhere. I'm sure I brought some in too. I've heard of studies that have shown recliners in fire halls are ripe with the stuff. It's on everything we touch, which is why hand-washing is such a good idea.
Well, that was easy for me to wrap my brain around, but mine is not clouded with IL-2, Demerol, Ativan, etc. Poor Heather thought this meant the end, not that she was sick with some infection, but that they were going to end her treatment and essentially kick us out. Not the case, but not an easy thing to convince her of. Truly, the only reason the nurse told her was to help explain why everyone now had to wear a yellow robe around her. Yep, including me. Yellow robe when in the room, take it off when I leave. (Is it like a kilt? Do I have to wear anything under it?)
Well, we finally convinced her that it really was no big deal. She even gets to wear a "Fancy" yellow robe when she leaves the room for a little walk through the halls. Phheeewwww!!!!
She made it through the night pretty well after that. She received her 5th dose at 2:00 AM, and even managed a few hours of sleep. Then, took the news really well at about 9:00 when she was told that she wasn't going to get the 6th dose at 10:00. BP too low, but being supported well by the Neo.
Other than trying to keep from crawling out of her skin, fairly relaxing day, which will typically lower most people's BP, but Heather managed to raise hers. Last one was 103/62 and she is on a low dose of the pressor, so.... the good news.... more IL-2 at 6:00!!! Back on schedule. Yippee!
Looking forward to hitting the half way point of this trip. 6/7 doses down, 7 left!
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