My breathing started getting very difficult on Wednesday the 21st and I was unable to sleep for more than 20 minutes at a time sitting almost straight up in bed. Friday night I slept in the den so that I would already be straight up and awoke at 12:15 feeling like I was suffocating. The feeling did not abate all day, so at 3 p.m. I asked Ed to take me to the local emergency room. I was put on oxygen and given Lasix to get rid of some of the fluid that was causing painful edema in my feet and arms. The doctor tried to get me transferred to Sloan since they have my medical history, but was told by Dr. Keohan that the sarcoma department does not accept transfers on weekends. If I had showed up at the urgent care center there, they would have taken me, but no transfers. I wonder what a true emergency is considered?
I was admitted and finally reached my room at 4:35 am Sunday. I had many tests including chest and pelvic CT scans, a full spine MRI, ultrasounds in my legs and arms to check for blood clots, a chest xray, and more bloodwork than you would believe. The positive thing that came out of all these tests, besides showing that I don't have any new mets causing problems, is that the fluid around my right lung was removed on Tuesday. The doctor withdrew .5 liters from one pocket of fluid, and that has significantly increased my lung capacity and allowed me to lie down at a 20 degree angle and get some real sleep. I still have a low sodium problem, edema and a few other issues, and I'm on oxygen most of the day especially after I'm walking a few minutes, but the procedure was a huge bonus. I can't understand why no one suggested that before, unless they thought it wasn't enough fluid to bother with. I've obviously had fluid there but it's possible the radiation made the situation much worse since the damaged tissue cannot absorb the fluid build-up as it normally would.
I was discharged yesterday and Ed bought me a 4-1 adjustable pillow from Brookstone (thanks for the recommendation, Lydia!). It's not perfect (in the hospital I could adjust the bed up and down as needed), but it helped a lot and I got a pretty good night's sleep. Of course, it always helps to be in your own bed without nurses wandering in and out all night. I'm trying to get some more exercise now that I'm home, but I have to take it slow. I'm going to push a little harder, because otherwise I'm just spinning in place.
Because I had several CT scans in the hospital, I'm not having them repeated for my follow up with Dr. K on Tuesday. She is going to recommend trying a different chemo, which I am going to refuse because I don't think one treatment is enough to judge anything by. I want to complete at least two more followed by scans to see what the results are. It's also going to take some more time for this radiated tumor to calm down, since it's obviously swelled from the radiation and made things temporarily worse. I'll report on my meeting with her next week.
I'm also seeing the neurosurgeon on Monday to discuss the cyst on my head. I know that it's filled with spinal fluid, but the idea that it should "just go away eventually" is not good enough. I want a timetable and what happens if it doesn't resolve itself during that time. The surgeon didn't really want to see me again, but I insisted and his nurse finally gave in. I guess if they have done their jobs, doctors don't particularly want to deal with you again if the problem is unusual but happens and they don't plan to do anything about it right away. Amazing, huh? Makes you wonder what you paid all that money for.
It's been a long day already and time for a nap. I'll be out of touch Monday and Tuesday, so be patient.
I hope you enjoy a wonderful weekend!
Saturday, July 31, 2010
Friday, July 23, 2010
My bad...
I knew I hadn't posted in a while but I didn't realize it had been eight days. Sorry about that!
I finished the radiation treatments on Tuesday and we were very glad not to have to go into the city another day -- especially since it started on the 8th with my follow up with Dr. Yamada and ended up with me in the hospital again on the 9th. Eleven days of either being in the city (me) or traveling into the city (Ed) is waaaay too much. After my treatment, I saw one of the residents (the radiation oncologist was not in) and she reminded me that it could be some time before I felt or saw any change. So far, the swelling in my hands and feet, which were pretty bad by Wednesday the 14th, have improved and the veins that were extremely prominent on my chest and upper arms (a sign of a compressed SVC I've come to learn) are less so, but the past two nights I have been unable to find a position in which I can be both comfortable and breathe easily -- especially without wheezing. Yesterday I restarted the six day course of steriods that the resident put me on on the 14th, so hopefully that will help me breathe easier very soon. If not, I'm not certain what the next step is, but I can't go too many more nights without getting more than 30 minutes of sleep at a time.
My next appointments have gotten really messed up, but I do have a schedule. August 2: 11 am nutritionist follow up; 1:45 pm neurosurgeon follow up about this huge cyst that still exists on the back of my head (I was told by his nurse that while it is unusual, it does happen and it's spinal fluid leaking out of the incision in my skull -- which would be practially impossible to find; more on this after we see him and find out if I even have any options); and CT scan of the chest, abdomen and pelvis at 4:05 (arrival at 3:05). We then see Dr. K the next morning at 11 to find out the results of the scans and when I restart Ifosfamide. I'm guessing it will be around August 10.
I have been doing a whole lot of nothing around here. I can barely do 14 minutes on the treadmill and going up stairs is a real chore. I don't know whether it's that I'm totally out of shape or this tumor has swelled from the radiation and it's making me very short of breath. I'm guessing it's a combination. I'm trying to get at least one thing done a day (this doesn't count) so at least I feel that I've accomplished something. We'll see how that goes.
At least I'm down to one medication daily (the steriod is temporary). I took myelf off the sodium and water restriction to see if it would help with the urination problem (I still can't believe I've been writing about this). It's made a big difference and I guess I'll find out when bloodwork is done on the 3rd how my sodium and other levels are. I probably should have my blood pressure checked before then since I'm off the medication for that too.
I no longer go out, even on my porch, without a hat. I don't have much hair at all, although there is some up there, and I certainly don't want to burn my scalp. If I didn't have this huge lump on the back of my head, I could wear more baseball caps, but I need bigger hats to hide it. Also, if the swelling would go out of my face, the hats would look better too. It's a good thing I'm not too vain!
It's supposed to feel like 100 degrees here tomorrow so you know I'll be indoors keeping cool. Hope the weather is more comfortable wherever you are -- or that you stay as comfortable as possible. Have a great weekend!
I finished the radiation treatments on Tuesday and we were very glad not to have to go into the city another day -- especially since it started on the 8th with my follow up with Dr. Yamada and ended up with me in the hospital again on the 9th. Eleven days of either being in the city (me) or traveling into the city (Ed) is waaaay too much. After my treatment, I saw one of the residents (the radiation oncologist was not in) and she reminded me that it could be some time before I felt or saw any change. So far, the swelling in my hands and feet, which were pretty bad by Wednesday the 14th, have improved and the veins that were extremely prominent on my chest and upper arms (a sign of a compressed SVC I've come to learn) are less so, but the past two nights I have been unable to find a position in which I can be both comfortable and breathe easily -- especially without wheezing. Yesterday I restarted the six day course of steriods that the resident put me on on the 14th, so hopefully that will help me breathe easier very soon. If not, I'm not certain what the next step is, but I can't go too many more nights without getting more than 30 minutes of sleep at a time.
My next appointments have gotten really messed up, but I do have a schedule. August 2: 11 am nutritionist follow up; 1:45 pm neurosurgeon follow up about this huge cyst that still exists on the back of my head (I was told by his nurse that while it is unusual, it does happen and it's spinal fluid leaking out of the incision in my skull -- which would be practially impossible to find; more on this after we see him and find out if I even have any options); and CT scan of the chest, abdomen and pelvis at 4:05 (arrival at 3:05). We then see Dr. K the next morning at 11 to find out the results of the scans and when I restart Ifosfamide. I'm guessing it will be around August 10.
I have been doing a whole lot of nothing around here. I can barely do 14 minutes on the treadmill and going up stairs is a real chore. I don't know whether it's that I'm totally out of shape or this tumor has swelled from the radiation and it's making me very short of breath. I'm guessing it's a combination. I'm trying to get at least one thing done a day (this doesn't count) so at least I feel that I've accomplished something. We'll see how that goes.
At least I'm down to one medication daily (the steriod is temporary). I took myelf off the sodium and water restriction to see if it would help with the urination problem (I still can't believe I've been writing about this). It's made a big difference and I guess I'll find out when bloodwork is done on the 3rd how my sodium and other levels are. I probably should have my blood pressure checked before then since I'm off the medication for that too.
I no longer go out, even on my porch, without a hat. I don't have much hair at all, although there is some up there, and I certainly don't want to burn my scalp. If I didn't have this huge lump on the back of my head, I could wear more baseball caps, but I need bigger hats to hide it. Also, if the swelling would go out of my face, the hats would look better too. It's a good thing I'm not too vain!
It's supposed to feel like 100 degrees here tomorrow so you know I'll be indoors keeping cool. Hope the weather is more comfortable wherever you are -- or that you stay as comfortable as possible. Have a great weekend!
Thursday, July 15, 2010
Radiation treatments
I finally made it back home late Tuesday afternoon. It felt good to be back in my own bed, although we're having a struggle getting my pillows set up correctly so I can breathe. I think we finally got it right last night and, of course, today is sheet chaning day! I wish we could glue the three pillows together so we can remove them and then replace them exactly as they are.
Before yesterday morning's treatment, the technician was concerned because my hands and arms are very swollen. She had the nurses check my vitals and call one of the radiation oncologist's residents to come and check me out. My heartrate is still quite high (130s) but my oxygen saturation is pretty good (95-98%). The doctor watched it as she had me walk around the floor to make certain I was okay. She decided to put me back on a low dose of steriods for 8 days, just to try to reduce the swelling that the radiation is causing in the tumor. I started the meds last night so hopefully my shortness of breath will be eased in a day or so. They will also have oxygen available for me during treatment since I have to lay on my back (very difficult for me to breathe that way). I don't think I'll need it since the treatment takes less than 10 minutes.
It's supposed to be a very hot weekend here in the northeast, so I plan to spend it indoors napping, under the umbrella outside or briefly in the pool (have to watch my sun exposure). I hope wherever you are and whatever you do, you have a wonderful weekend and stay cool!
Before yesterday morning's treatment, the technician was concerned because my hands and arms are very swollen. She had the nurses check my vitals and call one of the radiation oncologist's residents to come and check me out. My heartrate is still quite high (130s) but my oxygen saturation is pretty good (95-98%). The doctor watched it as she had me walk around the floor to make certain I was okay. She decided to put me back on a low dose of steriods for 8 days, just to try to reduce the swelling that the radiation is causing in the tumor. I started the meds last night so hopefully my shortness of breath will be eased in a day or so. They will also have oxygen available for me during treatment since I have to lay on my back (very difficult for me to breathe that way). I don't think I'll need it since the treatment takes less than 10 minutes.
It's supposed to be a very hot weekend here in the northeast, so I plan to spend it indoors napping, under the umbrella outside or briefly in the pool (have to watch my sun exposure). I hope wherever you are and whatever you do, you have a wonderful weekend and stay cool!
Tuesday, July 13, 2010
Here I am again
After the urination issue and the fact that I still needed some sort of allergy medication, I contacted Dr. K's office for help on Wednesday. When I didn't hear anything back, I called again on Thursday and was informed that she wanted to see me early Friday morning. Upon seeing me (8 days after my last appointment), listening to my racing heartrate and hearing that my breathing was a bit short, she decided I needed emergency radiation to the chest tumor because she believes the SVC (superior vena cava) was being further compressed. Soooo, she admitted me to the hospital once again, failing to mention my urination problem to anyone.
I told everyone about that problem but no one took it seriously until Friday night at midnight when I hadn't urinated for 12 hours. They catheterized me for two days, and so far things are running along much more smoothly. One problem possibly resolved.
When I was finally taken up to radiation, they did a scan and then spent the afternoon making their plan. I was supposed to have my first treatment at 5:30 pm, but didn't until 8:15. Then I was taken to my room. Poor Ed -- a very long day for him and then he had to drive back home whereas I could just go to bed.
I had another treatment at 6:30 pm Saturday and was supposed to be released on Sunday, but they screwed everything up and I spent another night. Yesterday, my treatment was supposed to be at 11:30 and then we were going to head home. Without telling us, they moved my appointment to 2:30 and Ed had to leave before I actually received treatment at 3 p.m. We're going to try again today. My treatment is scheduled for 11:30 but they are going to try to fit me in earlier and are going to try to schedule the rest of my appointments for 9 a.m.
I was originally going to have a total of five treatments, but they changed their minds and now I'll have nine -- two at a higher dose, and seven at a lower dose. They believe this will be more effective than five at the same high dose. I haven't met the radiation oncologist who is overseeing this treatment, but I hope to today to find out exactly what happened to make that change.
The on-call sarcoma doctor over the weekend and one of his assistants ordered Flonase for my allergies. They determined that it would not make me retain water (believe it or not, a lot of medications can do that). I've been taking it for two days now and it seems to help a bit. Perhaps a second problem resolved.
So that's why I've been out of touch once again. I hope to be home tonight but the fatigue is already starting to kick in, so don't expect too much in the way of updates over the next week or so. I'll do my best and thank you, as always, for keeping me in your thoughts.
I told everyone about that problem but no one took it seriously until Friday night at midnight when I hadn't urinated for 12 hours. They catheterized me for two days, and so far things are running along much more smoothly. One problem possibly resolved.
When I was finally taken up to radiation, they did a scan and then spent the afternoon making their plan. I was supposed to have my first treatment at 5:30 pm, but didn't until 8:15. Then I was taken to my room. Poor Ed -- a very long day for him and then he had to drive back home whereas I could just go to bed.
I had another treatment at 6:30 pm Saturday and was supposed to be released on Sunday, but they screwed everything up and I spent another night. Yesterday, my treatment was supposed to be at 11:30 and then we were going to head home. Without telling us, they moved my appointment to 2:30 and Ed had to leave before I actually received treatment at 3 p.m. We're going to try again today. My treatment is scheduled for 11:30 but they are going to try to fit me in earlier and are going to try to schedule the rest of my appointments for 9 a.m.
I was originally going to have a total of five treatments, but they changed their minds and now I'll have nine -- two at a higher dose, and seven at a lower dose. They believe this will be more effective than five at the same high dose. I haven't met the radiation oncologist who is overseeing this treatment, but I hope to today to find out exactly what happened to make that change.
The on-call sarcoma doctor over the weekend and one of his assistants ordered Flonase for my allergies. They determined that it would not make me retain water (believe it or not, a lot of medications can do that). I've been taking it for two days now and it seems to help a bit. Perhaps a second problem resolved.
So that's why I've been out of touch once again. I hope to be home tonight but the fatigue is already starting to kick in, so don't expect too much in the way of updates over the next week or so. I'll do my best and thank you, as always, for keeping me in your thoughts.
Tuesday, July 06, 2010
How Not to End Your Holiday Weekend
The holiday weekend was sunny and hot here in the northeast and I spent most of it indoors, although we did get in several hours in and around the pool. I can't spend too much time in the sun because I'm still on the antibiotic, but I slathered on the 30 spf sunblock and spent minimal time floating on the raft.
My allergies have really been bothering me the past few weeks, so I've been taking 12-hour Claritan D almost every day. At the end of last week, I started to notice that I was going longer and longer between visits to the bathroom, even after taking the medication to lower my potassium that Dr. K prescribed when I saw her on Thursday. I didn't think too much of it, until Saturday, when I urinated at 5:30 p.m. and didn't go again until 10:30 a.m. Sunday, and then didn't go again by 6 a.m. Monday morning. I knew something was very wrong because I could feel the pressure in my bladder, but nothing was happening. Into the car we climbed at 6:30 and headed to the hospital. I had to be catheterized and then they filled me with fluids. They also did bloodwork to check for an infection or kidney problems, but didn't find anything wrong. The catheter was removed at 12:30 and I was told if I went 12 hours without urinating again, I would have to come back.
When I hadn't gone by 5:45 this morning, I thought we were going to be spending another day at the hospital, but it turns out that the old wives' tale is true: If you run warm water over your wrist, it will make you go. I hope I won't have to do that every time, but it worked this morning.
I never even thought to mention to the doctor that I was taking Claritan D, and I never read the side effect of this drug. It turns out that it can cause less urination or none. If you take this drug and experience this symptom, that may be the cause. I've elimated it from the medications I can take, which is a problem because today I'm completely stuffed up and I don't know what to take. I'll have to check with the pharmacist.
So that's how our long weekend ended, but at least everything turned out okay in the end. With any luck, everything will return to normal in a few days.
I'm having my follow up MRI on Thursday and then seeing Dr. Yamada. I'll let you know what happens after the visit.
In the meantime, try to stay cool. It's supposed to reach 100 degrees here today. You know where I'll be!
My allergies have really been bothering me the past few weeks, so I've been taking 12-hour Claritan D almost every day. At the end of last week, I started to notice that I was going longer and longer between visits to the bathroom, even after taking the medication to lower my potassium that Dr. K prescribed when I saw her on Thursday. I didn't think too much of it, until Saturday, when I urinated at 5:30 p.m. and didn't go again until 10:30 a.m. Sunday, and then didn't go again by 6 a.m. Monday morning. I knew something was very wrong because I could feel the pressure in my bladder, but nothing was happening. Into the car we climbed at 6:30 and headed to the hospital. I had to be catheterized and then they filled me with fluids. They also did bloodwork to check for an infection or kidney problems, but didn't find anything wrong. The catheter was removed at 12:30 and I was told if I went 12 hours without urinating again, I would have to come back.
When I hadn't gone by 5:45 this morning, I thought we were going to be spending another day at the hospital, but it turns out that the old wives' tale is true: If you run warm water over your wrist, it will make you go. I hope I won't have to do that every time, but it worked this morning.
I never even thought to mention to the doctor that I was taking Claritan D, and I never read the side effect of this drug. It turns out that it can cause less urination or none. If you take this drug and experience this symptom, that may be the cause. I've elimated it from the medications I can take, which is a problem because today I'm completely stuffed up and I don't know what to take. I'll have to check with the pharmacist.
So that's how our long weekend ended, but at least everything turned out okay in the end. With any luck, everything will return to normal in a few days.
I'm having my follow up MRI on Thursday and then seeing Dr. Yamada. I'll let you know what happens after the visit.
In the meantime, try to stay cool. It's supposed to reach 100 degrees here today. You know where I'll be!
Friday, July 02, 2010
Things that make you go "Hmmmmm"
As you know, my potassium was considered too low last week, so I was put on pills for 7 days to increase the level. Well, yesterday, my potassium was too high, so I was given another medication to take to lower the level. That's just crazy. Standard procedure at Sloan for certain chemos is a Nulasta shot the following day to boost your white cell counts. Well, my white cell counts, which had been in the range of 4 to 5 tested on June 15 at 13! Despite that number, I was told to have the Nulasta shot, and yesterday Dr. K wondered what was going on with my white cell counts. Too high, she said. Well, do ya think? They are now 34! I think I will need to review those numbers in the future before I agree to another one of those "standard" shots. These things, and so many others, really make me scratch my head and wonder who exactly is crazy...
On a good note, Dr. K believes that Ifosfamide is working for me (remember this is the same doctor who laughed when I told her I thought the clinical trial was working for me). She is pleased with the reduced swelling in my arms, upper chest and neck -- not gone but greatly reduced -- and reassured me that the swelling in my face will go down as the steriod works its way out of my system. So no radiation consult for the chest tumor at this time, which is a good thing. I'd like to give Ifosfamide a few rounds to see what it can do first.
Speaking of which, I'm trying to arrange to do my next few treatments at the NJ facility (beginning with round 2 on July 12), which means I'll be able to sleep in my own bed at night and not have to travel into the city. The accomodations aren't quite as nice as Sloan, but Ed can drop me off at 9 and pick me up at 5 and not waste an entire day. And I can sleep until 7. Yay! I'm waiting to hear if the insurance company has approved it. Will let you know when I know.
On a final note before we begin the July 4 weekend: Happy 59th birthday to Ed!!!! Yes folks, as of today he has managed to survive not only life in general for 59 years but putting up with me for the last 28. Shouldn't he get some sort of cash prize?
Have a wonderful holiday weekend and enjoy those barbeques!
On a good note, Dr. K believes that Ifosfamide is working for me (remember this is the same doctor who laughed when I told her I thought the clinical trial was working for me). She is pleased with the reduced swelling in my arms, upper chest and neck -- not gone but greatly reduced -- and reassured me that the swelling in my face will go down as the steriod works its way out of my system. So no radiation consult for the chest tumor at this time, which is a good thing. I'd like to give Ifosfamide a few rounds to see what it can do first.
Speaking of which, I'm trying to arrange to do my next few treatments at the NJ facility (beginning with round 2 on July 12), which means I'll be able to sleep in my own bed at night and not have to travel into the city. The accomodations aren't quite as nice as Sloan, but Ed can drop me off at 9 and pick me up at 5 and not waste an entire day. And I can sleep until 7. Yay! I'm waiting to hear if the insurance company has approved it. Will let you know when I know.
On a final note before we begin the July 4 weekend: Happy 59th birthday to Ed!!!! Yes folks, as of today he has managed to survive not only life in general for 59 years but putting up with me for the last 28. Shouldn't he get some sort of cash prize?
Have a wonderful holiday weekend and enjoy those barbeques!
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