The nurse informed me on Friday that I would likely feel the side effects of the Nulasta shot over the weekend: achy bones and joints, especially the long bones (sternum, pelvis, femur) since they are the ones that produce the most white blood cells. Well, it wasn't until Monday evening when the pain in my lower back began, and it lasted for two days. Veeeery uncomfortable. Tylenol worked at first, but then I started taking Percocet on Tuesday. I only did that for a day, because it makes me feel better but also makes me a little nutty. Next time, I think I'll just stick with the Tylenol and maybe an ice pack. It feels fine now.
Just completed my third physical therapy session. I'm not sure that I'm making any progress other than more repetitions, longer pedaling, or using more weight, but I suppose the evaluation will show if there has been any improvement. I'm scheduled for four more sessions, so we'll see how they go. I don't think I'll continue after that. I think that once I'm off the steriod and my head clears up, I'll feel and function much better. Let's keep our fingers crossed. I am definitely walking and moving better than when I was in the hospital, but I still have room for improvement.
I'm hoping to do my next Ifosfamide treatment here in New Jersey with Dr. Windsor. They are going to contact the insurance company to see if they can get it approved. Although I would spend the day in a general room with up to 10 other people and one television, it would save me from traveling, staying in the city overnight by myself, and having to get up at 4 a.m. Ed could drop me off at 9 a.m. with my entertainment items for the day, lunch and snacks, and pick me up at 5. I would sleep in my own bed, have someone to make sure nothing weird happens to me, and go back the other two days the same way. I don't have a date for the next treatment yet (it's every 21 to 28 days), but I'll post it when I know.
Congratulations to all our grads out there. Kids are graduating from everything these days: elementary school, middle school, high school. Is there a kindergarten graduation too? Then congrats to you, too! Now take the next two months off and enjoy yourselves. No thinking about back to school stuff yet. Save that for July 5, when everything goes on sale.
I hope you get out this weekend and enjoy your pools, backyards, barbeques, friends and family. Good food and fun is what summer is all about. Don't forget the sunblock! I'll be back next week.
Friday, June 25, 2010
Friday, June 18, 2010
Made it through
The week started with my CT scans on Monday. I haven't read the report yet, but according to Dr. K, there was growth in the lung and chest tumors as expected. Currenly, the largest one in the chest is compressing my superior vena cava to the extent that I am having difficulty draining fluids. Normally, fluid in the head and arms drains through the lymph system and into the SVC, but because mine is compressed, my neck and arms are extremely full of fluid -- much more than can be attributed to the steriods and extra fluids that this new chemo requires (2 liters extra per day). I had an ultrasound yesterday to make sure there aren't any blood clots causing the problem (there aren't); it's just a long, slow, uncomfortable process. My skin is stretched to the limit on my arms and is quite uncomfortable. After this, I'm going to try laying down with my hands above my head to see if that helps at all.
Dr. K said that if the swelling doesn't resolve itself in a few days after giving me Lasix yesterday, she is going to admit me to the hospital (once again) for radiation treatment to the chest tumor. She is afraid that situation will get worse, and this would be the first line, last resort, fast method of trying to debulk the tumor enough get it off the SVC. I don't know how she would work that since I just finished the chemo, but I'm not due again for 21 to 28 days.
This afternoon I have to go for a Nulasta shot for my white counts -- although they are actually elevated so I'm not certain why this is a "must." Nevertheless, I'll get it locally so I don't have to go all the way back to NYC and they will check my labs again too since my sodium is down again (from 137 when I left the hospital to 127). This is a tough balancing act since I'm restricted on fluids because of the sodium but the chemo treatment requires extra hydration to protect the bladder and I'm not draining it all out. I'm sorry for me but feel a bit sorry for Dr. K since she has to figure out how to manage this correctly. I'm just following orders.
Anyway, Tuesday morning I arrived at 8 and they hooked me up to saline for 1.5 hours. Then I was given pre-meds for nausea, steriods, and then 15 minutes on Mezna, which is the drug to protect the bladder. That was followed by three hours on Ifosfamide, more hydration and two more bags of Menza over the next three hours. I got out of MSKCC at 6 p.m. and went directly to the apartment. Had Chinese takeout and I was in bed by about 8, getting up every two hours or so to urinate. Wednesday Ed stayed home, and treatment started about 8:15. I finally finished up at 5 and once again headed straight for the apartment. I was going to take a short nap and then eat leftovers, but I slept until 12:30! Heated up the Chinese food at 12:30 and had a little feast before calling it a night.
Yesterday the nurses had a meeting and were running behind so we didn't even start until after 9. That was interrupted by the ultrasound, and by the time everything was finished yesterday, it was 7:15 p.m. Ed had arrived around 3, so at least he wasn't stuck there all day, but it was a long one. We finally got home at 9:15, had some pasta, and I hit the sack at 10:30. Slept pretty well with frequent bathroom trips, woke up very hungry, but got nauseous after breakfast so I took an Ativan. That seems to have soothed the problem. I'm headed down for a nap after this, though, having cancelled my PT session for today. I don't have to be at Little Silver until 3:30, so I have time to catch some zzzzs. That's probably how I'll be spending the weekend.
According to Dr. K, the real fatigue will hit in about 10 days. Not looking forward to it if this isn't the "real fatigue." Sleep can't hurt though, correct? If you need it, you need it. It's going to keep me out of touch again, but know that I am thinking of all of you, and I know you are thinking of me.
Happy Father's Day to all our dads out there! And thanks, as always, for following along with my journey.
Dr. K said that if the swelling doesn't resolve itself in a few days after giving me Lasix yesterday, she is going to admit me to the hospital (once again) for radiation treatment to the chest tumor. She is afraid that situation will get worse, and this would be the first line, last resort, fast method of trying to debulk the tumor enough get it off the SVC. I don't know how she would work that since I just finished the chemo, but I'm not due again for 21 to 28 days.
This afternoon I have to go for a Nulasta shot for my white counts -- although they are actually elevated so I'm not certain why this is a "must." Nevertheless, I'll get it locally so I don't have to go all the way back to NYC and they will check my labs again too since my sodium is down again (from 137 when I left the hospital to 127). This is a tough balancing act since I'm restricted on fluids because of the sodium but the chemo treatment requires extra hydration to protect the bladder and I'm not draining it all out. I'm sorry for me but feel a bit sorry for Dr. K since she has to figure out how to manage this correctly. I'm just following orders.
Anyway, Tuesday morning I arrived at 8 and they hooked me up to saline for 1.5 hours. Then I was given pre-meds for nausea, steriods, and then 15 minutes on Mezna, which is the drug to protect the bladder. That was followed by three hours on Ifosfamide, more hydration and two more bags of Menza over the next three hours. I got out of MSKCC at 6 p.m. and went directly to the apartment. Had Chinese takeout and I was in bed by about 8, getting up every two hours or so to urinate. Wednesday Ed stayed home, and treatment started about 8:15. I finally finished up at 5 and once again headed straight for the apartment. I was going to take a short nap and then eat leftovers, but I slept until 12:30! Heated up the Chinese food at 12:30 and had a little feast before calling it a night.
Yesterday the nurses had a meeting and were running behind so we didn't even start until after 9. That was interrupted by the ultrasound, and by the time everything was finished yesterday, it was 7:15 p.m. Ed had arrived around 3, so at least he wasn't stuck there all day, but it was a long one. We finally got home at 9:15, had some pasta, and I hit the sack at 10:30. Slept pretty well with frequent bathroom trips, woke up very hungry, but got nauseous after breakfast so I took an Ativan. That seems to have soothed the problem. I'm headed down for a nap after this, though, having cancelled my PT session for today. I don't have to be at Little Silver until 3:30, so I have time to catch some zzzzs. That's probably how I'll be spending the weekend.
According to Dr. K, the real fatigue will hit in about 10 days. Not looking forward to it if this isn't the "real fatigue." Sleep can't hurt though, correct? If you need it, you need it. It's going to keep me out of touch again, but know that I am thinking of all of you, and I know you are thinking of me.
Happy Father's Day to all our dads out there! And thanks, as always, for following along with my journey.
Friday, June 11, 2010
Going strong
Today I did my second session of physical therapy. They have me mainly doing arm and balance exercises, although they put me on the exercise bike for 10 minutes today and I thought I was going to keel over. Had to stop a few times to catch my breath. I'm definitely out of shape. Afterward, Ed and I went out to lunch and then it was home for a nap. Tonight I'm going out with the girls to get a change of atmosphere and just hang out. I'm looking forward to it, especially since last week I was soooo ill. It's hard to believe that this time last week I was being sent back to a hospital room. Let's hope that doesn't happen again for a long time.
Yesterday I got most of my hair cut off. It's very short and dries in about 3 minutes without a blowdryer. I know that it won't make a difference as it will still be devastating when it falls out, but I can get used to a lot less hair in the meantime. And it's natural air conditioning for my head! I'm going to get my wig shortened, as it's too long for me, but I don't plan to wear it during the summer. Even though it's real hair, it's very hot.
Tomorrow I'm going to go see Mom, who hasn't seen me in more than a month. She was ill when I had my surgery, so she couldn't see me, and since then I've just been too tired to do a long visit. Ed's going to take me to the house so I can leave when I get tired. She'll be thrilled but shocked by my appearance, I'm sure. My face and neck are so blown up from the steriods, I look like a 120 lb. woman with a 300 lb. face. It's weird, but can't be helped.
No other news from here. Hope you all have a wonderful weekend.
Yesterday I got most of my hair cut off. It's very short and dries in about 3 minutes without a blowdryer. I know that it won't make a difference as it will still be devastating when it falls out, but I can get used to a lot less hair in the meantime. And it's natural air conditioning for my head! I'm going to get my wig shortened, as it's too long for me, but I don't plan to wear it during the summer. Even though it's real hair, it's very hot.
Tomorrow I'm going to go see Mom, who hasn't seen me in more than a month. She was ill when I had my surgery, so she couldn't see me, and since then I've just been too tired to do a long visit. Ed's going to take me to the house so I can leave when I get tired. She'll be thrilled but shocked by my appearance, I'm sure. My face and neck are so blown up from the steriods, I look like a 120 lb. woman with a 300 lb. face. It's weird, but can't be helped.
No other news from here. Hope you all have a wonderful weekend.
Wednesday, June 09, 2010
Busy, busy
Today I start my physical therapy. It's going to be a very broken schedule, however. I was scheduled to go Monday, Wednesday and Friday mornings, but I have to cancel at least two days next week now and obviously had to cancel this past Monday. We'll have to see how much this will help, but I'm keeping my fingers crossed that I do see a benefit.
Tomorrow I'm getting my hair cut down. I haven't been able to have it colored because of the surgery, so it will be interesting to see what it looks like once most of the color is cut off. It won't last for long anyway.
Monday Dr. K has scheduled me for a CT scan of my chest to see what's been happening since my last scans and dropping out of the trial. I go in on Tuesday at 8 a.m. to see her and then start Ifosfamide for three days.
If I'm feeling well on Friday, I'll go to physical therapy. Since I haven't had this treatment before, I don't know how it will affect me or how fast, so we'll have to play that by ear.
Otherwise, I'm sleeping pretty well (about three hours at a time) and still taking an afternoon nap. I walked on the treadmill yesterday for 20 minutes and then I made dinner! It really felt good to try out a new recipe and get back to chopping and stirring and creating. I haven't done that in a while -- frankly, when I was on the trial I wasn't interested in food at all -- so this is a very good thing. By the way, on Monday when they weighed me in the hospital I was just over 120 pounds. Big progress there!
Nothing else new. I'll report back when I have something interesting to share. Hope you are having a good week.
Tomorrow I'm getting my hair cut down. I haven't been able to have it colored because of the surgery, so it will be interesting to see what it looks like once most of the color is cut off. It won't last for long anyway.
Monday Dr. K has scheduled me for a CT scan of my chest to see what's been happening since my last scans and dropping out of the trial. I go in on Tuesday at 8 a.m. to see her and then start Ifosfamide for three days.
If I'm feeling well on Friday, I'll go to physical therapy. Since I haven't had this treatment before, I don't know how it will affect me or how fast, so we'll have to play that by ear.
Otherwise, I'm sleeping pretty well (about three hours at a time) and still taking an afternoon nap. I walked on the treadmill yesterday for 20 minutes and then I made dinner! It really felt good to try out a new recipe and get back to chopping and stirring and creating. I haven't done that in a while -- frankly, when I was on the trial I wasn't interested in food at all -- so this is a very good thing. By the way, on Monday when they weighed me in the hospital I was just over 120 pounds. Big progress there!
Nothing else new. I'll report back when I have something interesting to share. Hope you are having a good week.
Tuesday, June 08, 2010
More adventures!
Yes, I know you've been wondering why I haven't posted recently. Last Tuesday, the day I finished my last steriod pill, I began throwing up. The first time was after breakfast, so Ed and I simply thought I ate too much or too fast or maybe I had a stomach bug. I felt terrible, and couldn't get myself going all day. After that, I would vomit at least twice a day, sometimes in the middle of the night, and early in the morning it was just dry heaves. By Wednesday evening, I knew something was wrong so I called Dr. K's office on Thursday and they made me an appointment to see her Friday morning at 10. They did bloodwork and found that my sodium was very low and my electrolytes were off. She decided to admit me to the hospital right away, and actually made me go by ambulette, even though I had just walked five blocks to the clinic and could have taken the MSKCC shuttle from clinic to the hospital much faster and for free. Can't wait to see that bill.
Anyway, we got to the hospital around one and after checking in, we did the usual waiting game. Saw the urgent care doctor finally and she called in neurosurgery. My neurosurgeon and his fellow came and determined that I needed a CT scan of my brain to check for swelling. They believed (and were correct) that I had swelling in my brain from the radiation treatment on 5/26. That caused the vomiting, which caused the other problems. I was admitted and taken to my room around 6 p.m. (when they finally let me eat). I was put initally on a very restricted diet, but that was only for one day.
I received a very high dose of steriods in the hospital, but that has been cut in half now that I'm home. However, they have me on a very slow tapering off schedule, so I'll be on the steriods for several weeks. I look like Jerry Lewis did when he was on steriods, even though Ed says it's not that bad. I'm feeling better, with no vomiting since we were in urgent care Friday afternoon. I was put on salt pills in the hospital and am restricted to drinking 1.5 liters of liquids per day. It turns out that when you have anything going on in your brain or lungs, your body sends a signal to your kidneys to retain water. When you do, you dilute your blood and that leaches out the sodium. By restricting fluids and taking the salt pills, it forces the body to let the water go. My sodium level went from 126 to 137 during my stay, and I'll be taking the sodium tablets until I have bloodwork again next week.
Another interesting thing I learned: The adrenal gland produces a steriod naturally. When you start taking steriods, the gland gets the message to stop producing the steriod. You taper off the steriods purposely to get the gland to start producing its steriod again. The doctors at the hospital think that my gland failed to get the signal and didn't pick up making the steriod again. That may be part of the reason why my brain started swelling and didn't stop after going off the steriods.
So now I'm on all kinds of medications: steriods, antibiotic, Prilosec, sodium. My blood pressure tends to rise while I'm on steriods, so they gave me a prescription for blood pressure medication, but that one I think I'm going to skip. I don't need to add the side effects of blood pressure meds to my list of worries.
It was another adventure on this long road. Another three nights in the hospital. I'm hoping that the billing office got all the approvals from Oxford. Thank goodness MSKCC is in-network now. Two long hospital stays in a month would wipe out our savings, since at last look they charged $3,300 per night! Imagine the accomodations you could enjoy on a vacation for that kind of money.
It's great to be back home, and I'm looking forward to feeling much better than I had been last week. Actually, I feel better now than I have since the operation. We'll keep our fingers crossed that this continues. I start physical therapy tomorrow morning, so that should help as well.
Finally, Dr. K was in to see me yesterday (she was off duty over the weekend). She wants me to start Ifosfamide next Tuesday. Treatment lasts a total of about 8 hours every day for three days: pre-meds for nausea, the drug itself is about a 3-hour infusion, then hydration afterward. I'm going to stay in my boss's apartment Tuesday and Wednesday nights so that Ed doesn't have to come in and waste two days sitting there and I don't have to worry about traveling back and forth. I'll take a cab from his apartment directly to clinic and back, and Ed will come in on Thursday afternoon to take me home. The treatment is every four weeks, so we'll try this out and see how it works. I will lose my hair, so I'll have to come up with some ideas for covering my head for the summer. I'm definitely not doing a wig -- too hot and uncomfortable. Send me your ideas!
I'm going to call today for an appointment to cut my hair down. I've been told by my friend Kay that it doesn't really matter how much you prepare your hair or yourself for the falling out. It's devastating, but I'll just have to suck it up. Now I'll get to see what kind of scalp I have!
Thanks for keeping tabs on me and I apologize for not getting on the computer while I was at the hospital. I could barely get in a nap or a walk what with all the doctors and nurses and blood-drawers coming in every few minutes -- or so it seemed. Hopefully, I'm out for good and on the way to a complete recovery. As always, I am so appreciative of your support and good wishes.
One last note: Bon voyage to Lydia A. Have a fabulous trip. I soooo wish we were going with you!
Anyway, we got to the hospital around one and after checking in, we did the usual waiting game. Saw the urgent care doctor finally and she called in neurosurgery. My neurosurgeon and his fellow came and determined that I needed a CT scan of my brain to check for swelling. They believed (and were correct) that I had swelling in my brain from the radiation treatment on 5/26. That caused the vomiting, which caused the other problems. I was admitted and taken to my room around 6 p.m. (when they finally let me eat). I was put initally on a very restricted diet, but that was only for one day.
I received a very high dose of steriods in the hospital, but that has been cut in half now that I'm home. However, they have me on a very slow tapering off schedule, so I'll be on the steriods for several weeks. I look like Jerry Lewis did when he was on steriods, even though Ed says it's not that bad. I'm feeling better, with no vomiting since we were in urgent care Friday afternoon. I was put on salt pills in the hospital and am restricted to drinking 1.5 liters of liquids per day. It turns out that when you have anything going on in your brain or lungs, your body sends a signal to your kidneys to retain water. When you do, you dilute your blood and that leaches out the sodium. By restricting fluids and taking the salt pills, it forces the body to let the water go. My sodium level went from 126 to 137 during my stay, and I'll be taking the sodium tablets until I have bloodwork again next week.
Another interesting thing I learned: The adrenal gland produces a steriod naturally. When you start taking steriods, the gland gets the message to stop producing the steriod. You taper off the steriods purposely to get the gland to start producing its steriod again. The doctors at the hospital think that my gland failed to get the signal and didn't pick up making the steriod again. That may be part of the reason why my brain started swelling and didn't stop after going off the steriods.
So now I'm on all kinds of medications: steriods, antibiotic, Prilosec, sodium. My blood pressure tends to rise while I'm on steriods, so they gave me a prescription for blood pressure medication, but that one I think I'm going to skip. I don't need to add the side effects of blood pressure meds to my list of worries.
It was another adventure on this long road. Another three nights in the hospital. I'm hoping that the billing office got all the approvals from Oxford. Thank goodness MSKCC is in-network now. Two long hospital stays in a month would wipe out our savings, since at last look they charged $3,300 per night! Imagine the accomodations you could enjoy on a vacation for that kind of money.
It's great to be back home, and I'm looking forward to feeling much better than I had been last week. Actually, I feel better now than I have since the operation. We'll keep our fingers crossed that this continues. I start physical therapy tomorrow morning, so that should help as well.
Finally, Dr. K was in to see me yesterday (she was off duty over the weekend). She wants me to start Ifosfamide next Tuesday. Treatment lasts a total of about 8 hours every day for three days: pre-meds for nausea, the drug itself is about a 3-hour infusion, then hydration afterward. I'm going to stay in my boss's apartment Tuesday and Wednesday nights so that Ed doesn't have to come in and waste two days sitting there and I don't have to worry about traveling back and forth. I'll take a cab from his apartment directly to clinic and back, and Ed will come in on Thursday afternoon to take me home. The treatment is every four weeks, so we'll try this out and see how it works. I will lose my hair, so I'll have to come up with some ideas for covering my head for the summer. I'm definitely not doing a wig -- too hot and uncomfortable. Send me your ideas!
I'm going to call today for an appointment to cut my hair down. I've been told by my friend Kay that it doesn't really matter how much you prepare your hair or yourself for the falling out. It's devastating, but I'll just have to suck it up. Now I'll get to see what kind of scalp I have!
Thanks for keeping tabs on me and I apologize for not getting on the computer while I was at the hospital. I could barely get in a nap or a walk what with all the doctors and nurses and blood-drawers coming in every few minutes -- or so it seemed. Hopefully, I'm out for good and on the way to a complete recovery. As always, I am so appreciative of your support and good wishes.
One last note: Bon voyage to Lydia A. Have a fabulous trip. I soooo wish we were going with you!
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