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
Wednesday, July 1, 2009
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
Thursday, May 28, 2009
What's Up With the Doc 58? - Scan Day Insanity
Scan days are always a little crazy. I don't sleep well the night before. I don't get breakfast. I have to drink the berry smoothie contrast yuck. I get stuck for a port access for the dye. I get to lie on a hard table with my arms over my head, intermittently holding my breath. Then I get to wait for results. I got exactly what I expected on this one - continued progression of all lesions at about the same rate as while I was on treatment. Which means, yes, that nothing they've given me since last August has done diddly squat to even slow this thing down. All those lovely side effects for nothing.
The real insanity of this scan day came at 10:30 with a call from my oncologist who had just gotten a call from the reading radiologist. The neck pain that has been getting gradually worse over the last couple of weeks is from the same lesion in the C5 vertebra that was radiated in December. It's bigger and is now encroaching on the spinal canal and has consumed about 50% of the vertebral body. So both of them are worried that I'm going to sneeze and become a quadriplegic and they think something should be done right this very minute. Well, hold on, guys and gals. The scan was done today because today's the day that worked in my schedule. We added the cervical spine to the usual chest, abdomen, and pelvis because my neck's been hurting me more. But I'm no different today than I was yesterday and we didn't have to talk to the surgeon RIGHT THIS VERY MINUTE yesterday. Ugh. The orthopedic spine specialist who has been looking at my scans all along is out because he had his own neck surgery 2 1/2 weeks ago, but the radiologist called him at home, anyway, to make him look at the scans. He is blessedly in my camp on this. Yes, it's bigger; yes, it's encroaching a little bit on the spinal canal and vertebral foramen but not the spinal cord. But he's pretty sure nothing dramatically awful is going to happen right this minute. So he sent me for some plain films of my neck and to pick up a rigid cervical to use if I have a sudden increase in pain or any neurologic symptoms. Meanwhile, my oncologist is going to get a little second opinion from a neurosurgeon at Yale.
I am remarkably sanguine about this - not buying into the drama. Yes, my neck really hurts. And my low back and sacrum have become increasingly painful, too, by the way, but nothing structurally threatening there. A week ago my pain was easily controlled with 400 mg of Ibuprofen twice a day. Now I'm up to 600 mg every 8 hours and it's not holding me as well as I'd like. So I had already decided to ask for a pain specialist consult so I could talk to someone about making the move to narcotic pain control but hopefully in a manner that will allow me to keep functioning - long acting rather than short acting, keep awake meds if necessary, preplan for side effects. All things that pain specialists do much better than doctors who do acute disease management. I'm still going to ask for that. I'm also going to take a deep breath and wait and watch for a few days. My guy will be back in the office where he can look at comparison scans and the plain films I had today on Monday. My oncologist is going to have to suck it up and make some sort of educated guess about life expectancy because wouldn't you think any decision about surgery for the neck would have to take that into account?
Aside from the problems with the neck there's the question about what, if anything, to do about systemic treatment for the cancer. I'm going to have to let my oncologist calm down a little bit about the neck before I press him on these other issues. Hopefully we can discuss in some depth when I see him Tuesday. I'm going to want him to find out what phase I clinical trials I might be eligible for (so I can do my part to advance the science) at Yale and Memorial Sloan=Kettering. His office will be able to find out what my insurance will cover as far as post-fourth line treatment. I'm not about to spend thousands of my own dollars on something that is very unlikely to provide any significant benefit and I have very strong misgivings about asking my insurance company to throw good money after bad.
The radiologist was so upset when she called me this morning. She said, "This is just so disheartening." It's hard for me to believe, but I seem to be the only person in my little cancer world who understands (and has understood for many, many months) that this cancer really is going to kill me. The fact that it has allowed me to continue my life with very few sacrifices for this long is amazing to me and a great gift. We'll have to see how much more of that quality life I can wring out of this stone.
Meanwhile, the rhododendrons are blooming like crazy here. The next to weeks are a whirlwind of end of year recitals and concerts. Emma and Molly get here on Saturday and I still have our Texas trip to look forward to in July.
This week you can all just send strong thoughts to all these crazy doctors so that they can deliberate in a thoughtful manner and consider all of me and my life as they try to come up with recommendations for me. Then I can go to the crazy 8 ball and let it tell me what to do.
Lisa
The real insanity of this scan day came at 10:30 with a call from my oncologist who had just gotten a call from the reading radiologist. The neck pain that has been getting gradually worse over the last couple of weeks is from the same lesion in the C5 vertebra that was radiated in December. It's bigger and is now encroaching on the spinal canal and has consumed about 50% of the vertebral body. So both of them are worried that I'm going to sneeze and become a quadriplegic and they think something should be done right this very minute. Well, hold on, guys and gals. The scan was done today because today's the day that worked in my schedule. We added the cervical spine to the usual chest, abdomen, and pelvis because my neck's been hurting me more. But I'm no different today than I was yesterday and we didn't have to talk to the surgeon RIGHT THIS VERY MINUTE yesterday. Ugh. The orthopedic spine specialist who has been looking at my scans all along is out because he had his own neck surgery 2 1/2 weeks ago, but the radiologist called him at home, anyway, to make him look at the scans. He is blessedly in my camp on this. Yes, it's bigger; yes, it's encroaching a little bit on the spinal canal and vertebral foramen but not the spinal cord. But he's pretty sure nothing dramatically awful is going to happen right this minute. So he sent me for some plain films of my neck and to pick up a rigid cervical to use if I have a sudden increase in pain or any neurologic symptoms. Meanwhile, my oncologist is going to get a little second opinion from a neurosurgeon at Yale.
I am remarkably sanguine about this - not buying into the drama. Yes, my neck really hurts. And my low back and sacrum have become increasingly painful, too, by the way, but nothing structurally threatening there. A week ago my pain was easily controlled with 400 mg of Ibuprofen twice a day. Now I'm up to 600 mg every 8 hours and it's not holding me as well as I'd like. So I had already decided to ask for a pain specialist consult so I could talk to someone about making the move to narcotic pain control but hopefully in a manner that will allow me to keep functioning - long acting rather than short acting, keep awake meds if necessary, preplan for side effects. All things that pain specialists do much better than doctors who do acute disease management. I'm still going to ask for that. I'm also going to take a deep breath and wait and watch for a few days. My guy will be back in the office where he can look at comparison scans and the plain films I had today on Monday. My oncologist is going to have to suck it up and make some sort of educated guess about life expectancy because wouldn't you think any decision about surgery for the neck would have to take that into account?
Aside from the problems with the neck there's the question about what, if anything, to do about systemic treatment for the cancer. I'm going to have to let my oncologist calm down a little bit about the neck before I press him on these other issues. Hopefully we can discuss in some depth when I see him Tuesday. I'm going to want him to find out what phase I clinical trials I might be eligible for (so I can do my part to advance the science) at Yale and Memorial Sloan=Kettering. His office will be able to find out what my insurance will cover as far as post-fourth line treatment. I'm not about to spend thousands of my own dollars on something that is very unlikely to provide any significant benefit and I have very strong misgivings about asking my insurance company to throw good money after bad.
The radiologist was so upset when she called me this morning. She said, "This is just so disheartening." It's hard for me to believe, but I seem to be the only person in my little cancer world who understands (and has understood for many, many months) that this cancer really is going to kill me. The fact that it has allowed me to continue my life with very few sacrifices for this long is amazing to me and a great gift. We'll have to see how much more of that quality life I can wring out of this stone.
Meanwhile, the rhododendrons are blooming like crazy here. The next to weeks are a whirlwind of end of year recitals and concerts. Emma and Molly get here on Saturday and I still have our Texas trip to look forward to in July.
This week you can all just send strong thoughts to all these crazy doctors so that they can deliberate in a thoughtful manner and consider all of me and my life as they try to come up with recommendations for me. Then I can go to the crazy 8 ball and let it tell me what to do.
Lisa
Wednesday, May 20, 2009
What's Up With the Doc 57? - Good News/Bad News
Good news/bad news kind of day today. Starting with the good news, I have felt remarkably well for the last two days. The fatigue and weakness are falling away like magic. The nausea is almost gone and my appetite is fantastic - so much so that I gained 3 pounds in Colorado during the graduation extravaganza weekend. I feel really, really good.
The bad news is that I don't have any of the genomic alterations they were looking for at Dana-Farber. So my options at this point are an angiogenesis inhibitor (sorafenib or sunitinib) as a single agent, more chemotherapy, phase I clinical trials or nothing at this point. I'm set to see my oncologist on June 2nd after next week's scan to talk about options. In the meantime I'll talk to my Albuquerque oncologist friend and my family. I'm disinclined to pursue the phase I trial route for quality of life issues. I don't know what the insurance coverage/side effect profile situation is with the angiogenesis inhibitors. I'm also not particularly interested in going with 4th and 5th line chemotherapy while I'm feeling good but I'll mull things over.
Aside from cancer news, I spent a most wonderful weekend in Ft. Collins for Emma's graduation. Chris and Sheri were, as always, the most gracious hosts imaginable. They ended up hosting two parties, rather than the one they had been planning. The weather was beautiful, the graduate was beautiful and it was great to finally meet her roommate and best friend.
The bad news is that I don't have any of the genomic alterations they were looking for at Dana-Farber. So my options at this point are an angiogenesis inhibitor (sorafenib or sunitinib) as a single agent, more chemotherapy, phase I clinical trials or nothing at this point. I'm set to see my oncologist on June 2nd after next week's scan to talk about options. In the meantime I'll talk to my Albuquerque oncologist friend and my family. I'm disinclined to pursue the phase I trial route for quality of life issues. I don't know what the insurance coverage/side effect profile situation is with the angiogenesis inhibitors. I'm also not particularly interested in going with 4th and 5th line chemotherapy while I'm feeling good but I'll mull things over.
Aside from cancer news, I spent a most wonderful weekend in Ft. Collins for Emma's graduation. Chris and Sheri were, as always, the most gracious hosts imaginable. They ended up hosting two parties, rather than the one they had been planning. The weather was beautiful, the graduate was beautiful and it was great to finally meet her roommate and best friend.
Emma, Alex and Katy:
Hannah, me, Emma, and Philip
Sheri, Emma and Chris
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