Well, it's been a week. To make a long story short, last week's Navelbine just kicked my butt. I felt awful Thursday, Friday, Sunday and Monday. Saturday I got some sort of weird reprieve that let me play Mario Brothers on Lindsay and Jacob's Wii when they came up for a visit. Again, I find it hard to describe. Gastrointestinal symptoms seem to be at the center of it all with epigastric pain, bloating, cramping, nausea, early satiety, and loss of appetite. I also had a tremendous increase in my weakness and shortness of breath with even the slightest exertion. And, again, I just could not get comfortable. I called my oncologist on Monday and cancelled yesterday's and next week's Navelbine. I have an appointment on August 4th, after we get back from Texas, for Zometa and Navelbine and we'll go talk then, but at this point I'm not inclined to accept any more active treatment for this cancer. I presume that these symptoms are from the Navelbine and it's simply not worth it for a treatment that is most likely not to do anything for me and at best might extend my survival by a month or so. If these symptoms were from the cancer, then the Navelbine wouldn't be working anyway so why keep taking it? But every day I feel a little better, so it's pretty clear Navelbine is the culprit.
This is a difficult decision. To some it feels like giving up. To some it feels like accelerating the inevitable. To me it feels like claiming the last vestiges of feeling less than awful that I can claim. Because this decision is difficult and is processed in different ways by the people I love I also requested a hospice referral and the case manager will come out to meet with Robert and me tomorrow afternoon. South central Connecticut is actually the birthplace of hospice in America and they have a very strong program here. They have a program called CanSupport for people still on active treatment and that's what we're enrolling in at this time. But just the term hospice is a loaded one and I feel for all of you who have to process that.
Meanwhile, life goes on and is as busy as ever. Tonight, after work, Emma and I are driving to my cousin's house in Pennsylvania to crash before I deliver her to New Bolton Center early Thursday. I'll drive back in a leisurely fashion and see the hospice case manager late tomorrow afternoon. I have another clinical shift on Friday and a leisurely day (except for laundry!) on Saturday then Sunday I take an early train to Boston to pick Hannah up from volleyball camp at Boston College and drive her to another volleyball camp at Lehigh University. Then home, clinical shifts Monday and Wednesday next week and then we're off to Texas on Friday.
I start the last square of Lindsay's quilt today and should get it put together over the next couple of weeks, at which point I'll start Emma's. The outside of the house should be all painted by the end of this week and Robert is plugging away at the inside as time permits. The impatiens my friend planted last month are growing and blooming (I told you so!) and it is still very lush in Connecticut. It has been a lovely week, weather-wise, not preparing me in any way for Texas in July.
Think good thoughts to hurry away the last of the nasty Navelbine effects so I can enjoy life for a while. Thank you all again for keeping me in your thoughts and prayers.
Wednesday, July 15, 2009
Thursday, July 9, 2009
What's up With the Doc 64? - Still Learning
Being a cancer patient continues to teach me new things as a physician. The general level of discomfort that I described last week just kept getting worse. As bad as the general feeling of ill ease was the unrelentingness of it all. I just could not get comfortable, no matter what I tried. This resulted in early doses of oxycontin on Thursday and Friday last week, which completely took away the feeling of unease. So Saturday I started taking the oxycontin twice a day and have felt remarkably better ever since. I spoke to my oncologist about it Tuesday and he feels that I was actually experiencing opiate withdrawal during the day because I was only taking oxycontin at night and that taking the oxycontin as it is intended to be dosed, twice a day, I have taken care of that little problem. I feel sort of stupid, but long acting narcotics have not been part of my practice since before oxycontin came on the market, so I’ll try to forgive myself. I have been so skittish about the narcotics that I caused myself more trouble than I needed by trying to keep the dose as small as possible. Now my pain is more than adequately controlled on the lowest possible dose of oxycontin and I am not taking scheduled Ibuprofen any more. This gives me the option of taking either Ibuprofen or short acting narcotics in small doses when I have breakthrough pain. So life on the pain front is very good.
The neck pain is slowly settling down since the radiosurgery (2 weeks ago today) and I am having less and less tingling in my right arm. I have had no more tingling or pain in the left leg since early last week so that turned out to be a curative MRI, I guess.
I saw the radiation oncologist Tuesday and was released from care until I need him for something. I saw the oncologist and had Zometa and Navelbine Tuesday and I’m feeling pretty darned good today. With the pain adequately controlled, my only troublesome symptom is the weakness and I’m learning to live with that. It doesn’t seem to be getting any worse. I’ve learned to rest after stairs, bedmaking, and to limit the amount of standing I do. I use a stool when I see patients during the time I am taking their history so I only have to stand up for the exam. I’ll get a wheelchair for the air travel part of my Texas trip later this month. I’m not having any trouble with daytime sleepiness, just weakness.
My gut problems seem to have resolved with Colace and Miralax every day - but we’ll see if it holds me through this dose of Navelbine. I did develop a sore throat from the radiosurgery late last week and it hurts to swallow but I’m still holding my own on eating with no weight loss.
All in all, this week is better than last. I’m busy planning fall school things with all of my children and enjoying the first real summer weather we’ve seen over this last weekend.
The neck pain is slowly settling down since the radiosurgery (2 weeks ago today) and I am having less and less tingling in my right arm. I have had no more tingling or pain in the left leg since early last week so that turned out to be a curative MRI, I guess.
I saw the radiation oncologist Tuesday and was released from care until I need him for something. I saw the oncologist and had Zometa and Navelbine Tuesday and I’m feeling pretty darned good today. With the pain adequately controlled, my only troublesome symptom is the weakness and I’m learning to live with that. It doesn’t seem to be getting any worse. I’ve learned to rest after stairs, bedmaking, and to limit the amount of standing I do. I use a stool when I see patients during the time I am taking their history so I only have to stand up for the exam. I’ll get a wheelchair for the air travel part of my Texas trip later this month. I’m not having any trouble with daytime sleepiness, just weakness.
My gut problems seem to have resolved with Colace and Miralax every day - but we’ll see if it holds me through this dose of Navelbine. I did develop a sore throat from the radiosurgery late last week and it hurts to swallow but I’m still holding my own on eating with no weight loss.
All in all, this week is better than last. I’m busy planning fall school things with all of my children and enjoying the first real summer weather we’ve seen over this last weekend.
Wednesday, July 1, 2009
What's Up With the Doc 63? - A Little of This, A Little of That
After the radiosurgery on Thursday I had less neck pain and no arm tingling on Friday, which was a great big yay. Saturday we headed down I-95 to Bridgeport, took the Ferry to Port Jefferson and drove to my aunt and uncle's house for their 50th anniversary party. The party was a blast, the food was outstanding and it was a joy seeing all the cousins and their kids, but by three hours into it my neck was screaming. We bid our farewells and headed home, where I took an early dose of Oxycontin and slept with my rigid neck collar, which gave me some relief. I called the radiation oncology resident on call the next morning and started a little bit of steroids, figuring that I was experiencing some edema from the surgery. That has helped and I would say I'm almost back to my presurgery pain level and the arm tingling has settled down. I'm off steroids and using the collar as needed.
Friday I also experienced some very sharp pain in my left calf. I called the spine surgeon to ask him to look at my most recent CT scan to see if there was anything worrisome in the lumbosacral spine. Monday I developed tingling in the back of the left leg so he ordered an MRI, which was done yesterday. It doesn't look like there's anything (tumor or degenerative disc disease, both of which are present) pressing on spinal cord or nerve roots so I'll just take the scan with me when I see the radiation oncologist next week and see if we can figure out what's up.
I still get abdominal bloating and discomfort when I eat and have low grade nausea not completely controlled by the Reglan. It's finally starting to make my drive to and from work a bit challenging. For now I can handle it and plan to just keep an eye on it. I don't particularly want Robert to have to do four hours of driving every work day to get me to and from work. I'm also very weak. Two flights of stairs completely do me in. I'm not sure what all of that's about. I'm pretty sure the abdominal symptoms are from the Navelbine, which basically just puts the brakes on the entire GI tract. I'm hoping it's also causing the weakness and that should get a little better as this week off Navelbine progresses.
We had a lovely visit with our North Carolina friends on Sunday and are now fully engaged in the planning and anticipation for our Texas trip. I'm going to cave and ask for a wheelchair for the airport activities. I just don't think I can stand long enough to make it through a security line any more.
Emma finally started at the animal hospital yesterday. It was a very slow start but when she finally got hooked up with the "upstairs techs" apparently she had a good time. It's interesting for her to see how things run at a large, multivet practice in comparison to last summer when she worked for a very busy practice where everything was OK'd by the chief vet.
Hannah has started her hospital volunteering and Philip is at band camp. We'll go up for his end of camp concert and bring him home on Friday.
Next Tuesday I follow up with the radiation oncologist (I'm expecting that it will take a couple of weeks for the post surgical inflammation to settle down before I can really see what kind of benefit I might have derived from the surgery) followed by my oncologist for Zometa and Navelbine. Quilt work continues and I can't believe it's July already!
Lisa
Friday I also experienced some very sharp pain in my left calf. I called the spine surgeon to ask him to look at my most recent CT scan to see if there was anything worrisome in the lumbosacral spine. Monday I developed tingling in the back of the left leg so he ordered an MRI, which was done yesterday. It doesn't look like there's anything (tumor or degenerative disc disease, both of which are present) pressing on spinal cord or nerve roots so I'll just take the scan with me when I see the radiation oncologist next week and see if we can figure out what's up.
I still get abdominal bloating and discomfort when I eat and have low grade nausea not completely controlled by the Reglan. It's finally starting to make my drive to and from work a bit challenging. For now I can handle it and plan to just keep an eye on it. I don't particularly want Robert to have to do four hours of driving every work day to get me to and from work. I'm also very weak. Two flights of stairs completely do me in. I'm not sure what all of that's about. I'm pretty sure the abdominal symptoms are from the Navelbine, which basically just puts the brakes on the entire GI tract. I'm hoping it's also causing the weakness and that should get a little better as this week off Navelbine progresses.
We had a lovely visit with our North Carolina friends on Sunday and are now fully engaged in the planning and anticipation for our Texas trip. I'm going to cave and ask for a wheelchair for the airport activities. I just don't think I can stand long enough to make it through a security line any more.
Emma finally started at the animal hospital yesterday. It was a very slow start but when she finally got hooked up with the "upstairs techs" apparently she had a good time. It's interesting for her to see how things run at a large, multivet practice in comparison to last summer when she worked for a very busy practice where everything was OK'd by the chief vet.
Hannah has started her hospital volunteering and Philip is at band camp. We'll go up for his end of camp concert and bring him home on Friday.
Next Tuesday I follow up with the radiation oncologist (I'm expecting that it will take a couple of weeks for the post surgical inflammation to settle down before I can really see what kind of benefit I might have derived from the surgery) followed by my oncologist for Zometa and Navelbine. Quilt work continues and I can't believe it's July already!
Lisa
Thursday, June 25, 2009
What's Up With the Doc 62? - Positively Positive
Overall, this has been a much better week than last. I really have only one complaint, so we'll get that out of the way early. Navelbine stops my gastrointestinal tract dead. I am still fine tuning my combination of stool softener and laxatives to try to keep things moving but not by way of painful cramps and explosive you know what. It's weird. It's not just constipation - everything stops. I get bloating and heartburn after I eat and later on lower abdominal bloating and pain. Right now I'm taking Colace and Senna and Miralax.
The fatigue that was so debilitating last week miraculously lifted Thursday evening. It happened again this week on Wednesday, the day after chemo, but was pretty much gone this morning. One day a week, three weeks out of four, of fatigue so severe that I can barely stand up long enough to complete a patient exam I can deal with.
The nausea I was experiencing last week, aggravated by the GI not moving thing, has been much helped by Reglan with no side effects that I can identify.
My pain is currently well controlled on Ibuprofen 600 mg three times a day and Oxycontin 10 mg at night. I add .5 mg Ativan at night and am sleeping well through the night.
Today was the stereotactic radiosurgery. That was a good thing, as I have been having more and more frequent tingling in my right forearm. That's consistent with the tumor in my neck pressing on the C6 nerve root. The radiation oncologist thinks the surgery will take care of that. I asked him how long that would take and he said I'd have to tell him. He promised me some guinea pig food if I'm a really good lab animal. I premedicated myself with 10 mg of Oxycontin and .5 mg of Ativan and a good thing it was. They laid me on the hard CT table and clamped me down with the mask. Here's a picture of me with the mask on my family room floor and Emma's dog looking on:
It was a long and sometimes uncomfortable 45 minutes but was over soon enough. Once they unclamped and released me the radiation oncologist sat me down at the computer to show how they had used 2 different CTs and an MRI to exactly target the radiation and try to avoid structures like my spinal cord and esophagus. It was really cool and Boy! I bet that's a big bill. Thank goodness for insurance. In addition to explaining all of this to me, Emma and Robert wanted to see the linear accelerator and control room and the techs were nice enough to give them the grand tour while I was getting ready. I'm not sure how much they liked seeing me clamped to the table, but it didn't spoil their appetites (they had some awful cafeteria food while I was on the table) and they were very happy to see me walk out of the treatment area alive. I ate on the way home and took my Oxycontin and Ativan to bed for a three hour nap and here I am, good as new.
My mother's visit and the birthday weekend were just as wonderful as I hoped. Everyone is crediting my mother with the miraculous lifting of the fatigue, since that occurred while I was driving to the airport with Emma to pick her up a week ago. The flank steak sandwiches and Boston Cream Pie were perfection (thank you Robert, Lindsay and Emma!).
Best news of all - I get next week off from treatment! The Navelbine is three weeks on, one off and the Zometa is every four so nothing is due until July 7.
Hannah and Philip are finally out of school. Philip leaves for band camp on Saturday. Hannah is working and starts volunteering at the hospital in New Haven next week. Getting Emma enrolled as a grad student in an internship at CSU so she can volunteer at the animal hospital has been a Herculean task but is accomplished and, hopefully, she will start there next week and should be able to get in a couple of good weeks before she heads for Pennsylvania. We are heading to Long Island for my aunt and uncle's 50th wedding anniversary on Saturday and have friends coming for a quick visit on Sunday.
Here's hoping for nothing but visit reports next week (and maybe some guinea pig food if the arm tingling goes right away).
Lisa
The fatigue that was so debilitating last week miraculously lifted Thursday evening. It happened again this week on Wednesday, the day after chemo, but was pretty much gone this morning. One day a week, three weeks out of four, of fatigue so severe that I can barely stand up long enough to complete a patient exam I can deal with.
The nausea I was experiencing last week, aggravated by the GI not moving thing, has been much helped by Reglan with no side effects that I can identify.
My pain is currently well controlled on Ibuprofen 600 mg three times a day and Oxycontin 10 mg at night. I add .5 mg Ativan at night and am sleeping well through the night.
Today was the stereotactic radiosurgery. That was a good thing, as I have been having more and more frequent tingling in my right forearm. That's consistent with the tumor in my neck pressing on the C6 nerve root. The radiation oncologist thinks the surgery will take care of that. I asked him how long that would take and he said I'd have to tell him. He promised me some guinea pig food if I'm a really good lab animal. I premedicated myself with 10 mg of Oxycontin and .5 mg of Ativan and a good thing it was. They laid me on the hard CT table and clamped me down with the mask. Here's a picture of me with the mask on my family room floor and Emma's dog looking on:
It was a long and sometimes uncomfortable 45 minutes but was over soon enough. Once they unclamped and released me the radiation oncologist sat me down at the computer to show how they had used 2 different CTs and an MRI to exactly target the radiation and try to avoid structures like my spinal cord and esophagus. It was really cool and Boy! I bet that's a big bill. Thank goodness for insurance. In addition to explaining all of this to me, Emma and Robert wanted to see the linear accelerator and control room and the techs were nice enough to give them the grand tour while I was getting ready. I'm not sure how much they liked seeing me clamped to the table, but it didn't spoil their appetites (they had some awful cafeteria food while I was on the table) and they were very happy to see me walk out of the treatment area alive. I ate on the way home and took my Oxycontin and Ativan to bed for a three hour nap and here I am, good as new.
My mother's visit and the birthday weekend were just as wonderful as I hoped. Everyone is crediting my mother with the miraculous lifting of the fatigue, since that occurred while I was driving to the airport with Emma to pick her up a week ago. The flank steak sandwiches and Boston Cream Pie were perfection (thank you Robert, Lindsay and Emma!).
Best news of all - I get next week off from treatment! The Navelbine is three weeks on, one off and the Zometa is every four so nothing is due until July 7.
Hannah and Philip are finally out of school. Philip leaves for band camp on Saturday. Hannah is working and starts volunteering at the hospital in New Haven next week. Getting Emma enrolled as a grad student in an internship at CSU so she can volunteer at the animal hospital has been a Herculean task but is accomplished and, hopefully, she will start there next week and should be able to get in a couple of good weeks before she heads for Pennsylvania. We are heading to Long Island for my aunt and uncle's 50th wedding anniversary on Saturday and have friends coming for a quick visit on Sunday.
Here's hoping for nothing but visit reports next week (and maybe some guinea pig food if the arm tingling goes right away).
Lisa
Wednesday, June 17, 2009
What's Up With the Doc 61? - Hanging In There
I had a lovely porch sitting weekend with Claudia. There's not a whole lot new to report this week. I had chemo #2 yesterday with no adverse events. Overall I seem to be getting weaker and weaker and it really just frustrates me to no end. I have real difficulty explaining it - I can't stand for more than a few moments, I can't sit without back support for more than a few moments and I'm more comfortable semi-reclining than anything else. Even the quilt or posting feel like they take more energy than I have to spare. I'm still working, and that's a struggle. I'm not sure I actually could work two consecutive clinical shifts, but I don't have to so it doesn't matter. I continue with constant low to moderate grade nausea. Additionally, since starting the Navelbine, I have abdominal bloating and just general unease. We are going to try Reglan on the theory that my entire digestive tract just isn't moving like it's supposed to.
I thought I was going to have the radiosurgery this week but it turns out it won't be until next. I've started taking Oxycontin at night along with my Ibuprofen during the day but the neck pain is getting progressively worse and I'd like to get on with the treatment before I have to consider Oxycontin during the day. My low back is also starting to give me fits, and I suppose I'll have to discuss that with the radiation oncologist when I see him next week.
Emma is finding that being a grad student is much, much better than being an undergrad. People actually respond to emails and phone calls! She's admitted and, as soon as they figure out what registration glitch is keeping her from enrolling in the animal science internship, can start working at the vet hospital where Chester is having something cut off his ear today.
My birthday is Saturday. My mom gets in tomorrow. Lindsay's coming up and we have my favorite flank steak and grilled pepper sandwiches and Boston cream pie planned.
Today is the last day of classes for Hannah and Philip. They finish finals next Tuesday and then play for graduation Wednesday night and then they are done with school. Philip goes to band camp from the 27th to July 3rd. Hannah goes to volleyball camp from July 17-22. Emma goes to New Bolton Center for some equine vet experience from July 16-22. Robert and I leave for Texas July 24th and get home the 29th and Emma heads back to Colorado July 25th.
Right now my coworkers are serving up early birthday cake for breakfast!
I thought I was going to have the radiosurgery this week but it turns out it won't be until next. I've started taking Oxycontin at night along with my Ibuprofen during the day but the neck pain is getting progressively worse and I'd like to get on with the treatment before I have to consider Oxycontin during the day. My low back is also starting to give me fits, and I suppose I'll have to discuss that with the radiation oncologist when I see him next week.
Emma is finding that being a grad student is much, much better than being an undergrad. People actually respond to emails and phone calls! She's admitted and, as soon as they figure out what registration glitch is keeping her from enrolling in the animal science internship, can start working at the vet hospital where Chester is having something cut off his ear today.
My birthday is Saturday. My mom gets in tomorrow. Lindsay's coming up and we have my favorite flank steak and grilled pepper sandwiches and Boston cream pie planned.
Today is the last day of classes for Hannah and Philip. They finish finals next Tuesday and then play for graduation Wednesday night and then they are done with school. Philip goes to band camp from the 27th to July 3rd. Hannah goes to volleyball camp from July 17-22. Emma goes to New Bolton Center for some equine vet experience from July 16-22. Robert and I leave for Texas July 24th and get home the 29th and Emma heads back to Colorado July 25th.
Right now my coworkers are serving up early birthday cake for breakfast!
Thursday, June 11, 2009
What's Up With the Doc 60? - I Really Hate MRIs
Well, I survived Tuesday and I consider that quite an accomplishment. It was the day from HELL in an already overscheduled week. We left the house at 6 to go to New Haven for my MRI. I KNEW with all my knowing ability that this scan was going to be awful, given my baseline back and neck pain. So I took an oxycodone AND an ativan before the test and was STILL crying by the time they finally finished after having me on the table for an hour and a half. The radiation oncologist had told me that I would also be on the CT table for 45 minutes for the treatment planning CT and mask molding so I took another oxycodone when I got out of MRI. I sat in the waiting room with Robert doing crossword puzzles for about an hour and then they called me in for the CT. By this time I was completely loopy, nauseated, but in no pain. In fact, I was only on the table for about 15 minutes. The mask thing was really cool! I laid on the table with my eyes closed and they put this warm, wet thing over my face and shoulders and clipped it to the table. It was this purple plastic mesh stuff that molded to my face and shoulders and will hold me COMPLETELY motionless for the radiosurgery next week. It was weird to see me lying on the counter when I left.
Robert took me home where I had a peanut butter sandwich and then crashed for a while. At 2 we went to the oncologist's office for Zometa and chemo. Counts were fine and chemo went without a hitch. Bonus was some IV antinausea medicine which cleared up the leftover nausea from the morning oxycodone.
After chemo I dropped Robert at home and drove to Hamden to meet Emma for the second half of her doctor's appointment. We came home, had dinner and then went to the end of the year band concert which ran 2 hours and 15 minutes. It was great and I kept reminding myself that it was very possibly the last time I'll see my kids perform on stage but I was completely wiped out by the time it was over. Fell into bed with another ativan and slept the sleep of the just. Yesterday morning I was slightly foggy, not in much pain and a bit tired but the clinical schedule was VERY light and I had no evening commitments.
Hannah and Philip have 6 more class days and then finals. My best childhood friend gets in for a sit on the porch weekend on Friday. Radiosurgery will probably be next week and my mom gets in that Thursday for my birthday weekend.
I made it through Tuesday! Woo and hoo!
Robert took me home where I had a peanut butter sandwich and then crashed for a while. At 2 we went to the oncologist's office for Zometa and chemo. Counts were fine and chemo went without a hitch. Bonus was some IV antinausea medicine which cleared up the leftover nausea from the morning oxycodone.
After chemo I dropped Robert at home and drove to Hamden to meet Emma for the second half of her doctor's appointment. We came home, had dinner and then went to the end of the year band concert which ran 2 hours and 15 minutes. It was great and I kept reminding myself that it was very possibly the last time I'll see my kids perform on stage but I was completely wiped out by the time it was over. Fell into bed with another ativan and slept the sleep of the just. Yesterday morning I was slightly foggy, not in much pain and a bit tired but the clinical schedule was VERY light and I had no evening commitments.
Hannah and Philip have 6 more class days and then finals. My best childhood friend gets in for a sit on the porch weekend on Friday. Radiosurgery will probably be next week and my mom gets in that Thursday for my birthday weekend.
I made it through Tuesday! Woo and hoo!
Tuesday, June 2, 2009
What's Up With the Doc 59? - Phase Number Next
First, what's up with my neck - I met with the spine surgeon yesterday and he's confident that the structural stability of my spine is fine. The tumor is growing, is causing more pain, and is threatening my vertebral artery (probably not a huge deal, but you never know). If it continues to grow it could (and probably would) threaten the nerve root exiting at that level and, eventually, my spinal cord. So all are in agreement that something should be done about it. Choices are real surgery and stereotactic radiosurgery. While there is some really amazing stuff going on with actual vertebral body replacement surgery, everyone is in agreement that my life expectancy is not long enough to warrant the huge hit that my quality of life would take with that kind of major surgery and recovery, so radiosurgery it is. I have a treatment planning CT scheduled for Tuesday in New Haven and the treatment itself will be the 18th or 19th.
Next, never let it be said that I don't know my oncologist. Today was the post-scan, figure out what we're doing visit. First we talked about pain control because pain is the thing that is most threatening to my quality of life at the moment. He is perfectly comfortable managing my pain until (and if) I need really huge doses of oxycontin or morphine, not likely to be the case with me for quite a long while. For now, I'm to continue the Ibuprofen and start taking 5 mg of oxycodone whenever. If I get to the point where I'm regularly taking 20 mg or more a day we'll start oxycontin. I'm cool with that plan and plan to start with bedtime oxycodone because probably a decent night's sleep will help me during the day. Then we got to the heart of the matter - what next for the cancer? He is perfectly in agreement with me that it makes no sense to undertake any challenging treatment at this point. The cisplatin/taxotere was the last shot at trying for a significant response. Now it's just whatever we can think of to control disease without making me feel awful. He wants to go to Navalbine - 10 minute infusion weekly for three weeks, off one week, then repeat ad infinitum. Even his chemo nurse says this one is easy. Major problem is usually constipation, which, with starting opiates at the same time, I'll have to be fairly aggressive about preventing.
I have been really good about not asking prognosis questions but I couldn't help myself today. He wouldn't make any predictions. He said that he knows I like to plan ahead a little bit (Emma was with me and rolled her eyes all the way into the back of her head at that understatement) but that experiences are so varied it's impossible to give any idea whatsoever. He told me that 25% of people admitted to inpatient hospice are discharged! He also said that things tend to go more quickly with people who give up and I made it clear that there are way too many things on my "I want to be there for..." list for me to ever give up and give in. So we left it at Navalbine and Zometa next Tuesday and we'll see how it goes.
So, there's a plan in hand that makes sense to me. Philip turned 15 yesterday - cake was had by all. End of year orchestra and jazz ensemble concert is tomorrow night. Hannah takes SAT II Saturday and it's Emma birthday. Lindsay is coming up and the two of them are going to trip the light fantastic. Monday is Philip's trumpet recital and Tuesday is the end of year concert band and wind ensemble concert. So look for something next Wednesday reporting on all these events and the first Navalbine treatment.
Love to all,
Lisa
Next, never let it be said that I don't know my oncologist. Today was the post-scan, figure out what we're doing visit. First we talked about pain control because pain is the thing that is most threatening to my quality of life at the moment. He is perfectly comfortable managing my pain until (and if) I need really huge doses of oxycontin or morphine, not likely to be the case with me for quite a long while. For now, I'm to continue the Ibuprofen and start taking 5 mg of oxycodone whenever. If I get to the point where I'm regularly taking 20 mg or more a day we'll start oxycontin. I'm cool with that plan and plan to start with bedtime oxycodone because probably a decent night's sleep will help me during the day. Then we got to the heart of the matter - what next for the cancer? He is perfectly in agreement with me that it makes no sense to undertake any challenging treatment at this point. The cisplatin/taxotere was the last shot at trying for a significant response. Now it's just whatever we can think of to control disease without making me feel awful. He wants to go to Navalbine - 10 minute infusion weekly for three weeks, off one week, then repeat ad infinitum. Even his chemo nurse says this one is easy. Major problem is usually constipation, which, with starting opiates at the same time, I'll have to be fairly aggressive about preventing.
I have been really good about not asking prognosis questions but I couldn't help myself today. He wouldn't make any predictions. He said that he knows I like to plan ahead a little bit (Emma was with me and rolled her eyes all the way into the back of her head at that understatement) but that experiences are so varied it's impossible to give any idea whatsoever. He told me that 25% of people admitted to inpatient hospice are discharged! He also said that things tend to go more quickly with people who give up and I made it clear that there are way too many things on my "I want to be there for..." list for me to ever give up and give in. So we left it at Navalbine and Zometa next Tuesday and we'll see how it goes.
So, there's a plan in hand that makes sense to me. Philip turned 15 yesterday - cake was had by all. End of year orchestra and jazz ensemble concert is tomorrow night. Hannah takes SAT II Saturday and it's Emma birthday. Lindsay is coming up and the two of them are going to trip the light fantastic. Monday is Philip's trumpet recital and Tuesday is the end of year concert band and wind ensemble concert. So look for something next Wednesday reporting on all these events and the first Navalbine treatment.
Love to all,
Lisa
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