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
Thursday, May 28, 2009
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
Thursday, May 14, 2009
What's Up With the Doc 56? - A Better Week
Thank you all so much for lifting me up last week. I was definitely demoralized and out of gas and all the support helped fill the tank up again.
I saw my oncologist on Friday for Zometa. Still waiting for the genetic testing results from Dana-Farber. There is no HER2 mutation but EML4-ALK FISH results are pending as is the BRAF mutation test. The new neck pain hasn't really been a problem since early last week. I'm still having various aches and pains related to bony metastases - neck, back and left hip, mostly, but all tolerable with 400 mg Ibuprofen twice a day. The oncologist has no idea what the itchy skin lesions are but they seem to be improving with hydrocortisone cream. My counts last week were fine - red cell numbers are as good as they've been since I was diagnosed. My vitals were great - while on treatment I tend to run a heartrate in the low 100s and it was back down to the 70s on Friday. He was fine with not doing anything treatment-wise until after a scan (scheduled for 5/28 instead of 5/26 because Robert's got an EGD scheduled on the 26th) so I'll see him on June 2nd and we'll go from there depending what Dana-Farber comes up with.
For the last few days I've been having weird, mostly fleeting abdominal pains. Some are in the right upper quadrant (where the liver lives), some in the right lower quadrant (where I no longer have an appendix). I called my chemo nurse Tuesday to see if they had drawn chemistries on Friday because I worry about my liver. All chemistries (with the exception of alkaline phosphatase, which is minimally elevated -- probably because of all those bone metastases) are completely normal. My liver function tests are better than they were 4 months BEFORE I was diagnosed. I told her I was frustrated by the continuing weakness and she asked if I was eating and drinking normally. I told her that I was and that I wondered if the radiation therapy I finished last Monday might be contributing. She sighed and told me that she was pretty sure that that was THE cause of the weakness. She said people tend to get more wiped out by radiation therapy than chemotherapy and that I should rest when I feel like resting and that my strength will come back over the next few weeks. When I think back to my radiation therapy experience in December I realize that it's difficult to draw parallels because I had that awful radiation pharyngitis/esophagitis along with the fatigue and weakness and started chemotherapy before I had even recovered from that. So I'm grateful for this treatment break that will hopefully give me time to recover from all the treatments that have assailed my reserve over the last 14 months.
Bottom line - I'm hopeful that I will have the opportunity to get the bounce back in my step over the next few weeks. All objective information says that mild bone pain is the only specific symptom being caused by the cancer itself - off treatment my appetite is good, weight is stable (5 pounds over what I weighed at diagnosis) vital signs and labs normal and no fever. The abdominal pain? Much better yesterday after a laxative Tuesday night so probably proof positive that I am (or was) full of s**t.
So! I leave tomorrow for Colorado and Emma's graduation. Emma arrives for the summer at the end of May. My best childhood friend is visiting mid-June and my mother is coming back for my 51st birthday after that. Robert and I are planning to attend Ian's white coat ceremony. If that is at UT San Antonio it will be July 26th and we will spend the following week in Texas visiting. He is still waiting to hear from UT Southwestern and Oregon. If he winds up going to UT Southwestern the white coat ceremony will be in mid-August and we'd move the entire Texas trip to coincide. If he winds up going to Oregon we'll do the Texas trip as previously planned and head to Portland for a brief visit for the ceremony itself.
Typing all of this reminds me that I didn't expect to make it to Emma's graduation, much less Ian's white coat ceremony, and here I am. I am so very grateful to be here and well enough to attend and enjoy these events. Next up on the wish list are Hannah's senior volleyball season and Robert's Medicare eligibility birthday.
I saw my oncologist on Friday for Zometa. Still waiting for the genetic testing results from Dana-Farber. There is no HER2 mutation but EML4-ALK FISH results are pending as is the BRAF mutation test. The new neck pain hasn't really been a problem since early last week. I'm still having various aches and pains related to bony metastases - neck, back and left hip, mostly, but all tolerable with 400 mg Ibuprofen twice a day. The oncologist has no idea what the itchy skin lesions are but they seem to be improving with hydrocortisone cream. My counts last week were fine - red cell numbers are as good as they've been since I was diagnosed. My vitals were great - while on treatment I tend to run a heartrate in the low 100s and it was back down to the 70s on Friday. He was fine with not doing anything treatment-wise until after a scan (scheduled for 5/28 instead of 5/26 because Robert's got an EGD scheduled on the 26th) so I'll see him on June 2nd and we'll go from there depending what Dana-Farber comes up with.
For the last few days I've been having weird, mostly fleeting abdominal pains. Some are in the right upper quadrant (where the liver lives), some in the right lower quadrant (where I no longer have an appendix). I called my chemo nurse Tuesday to see if they had drawn chemistries on Friday because I worry about my liver. All chemistries (with the exception of alkaline phosphatase, which is minimally elevated -- probably because of all those bone metastases) are completely normal. My liver function tests are better than they were 4 months BEFORE I was diagnosed. I told her I was frustrated by the continuing weakness and she asked if I was eating and drinking normally. I told her that I was and that I wondered if the radiation therapy I finished last Monday might be contributing. She sighed and told me that she was pretty sure that that was THE cause of the weakness. She said people tend to get more wiped out by radiation therapy than chemotherapy and that I should rest when I feel like resting and that my strength will come back over the next few weeks. When I think back to my radiation therapy experience in December I realize that it's difficult to draw parallels because I had that awful radiation pharyngitis/esophagitis along with the fatigue and weakness and started chemotherapy before I had even recovered from that. So I'm grateful for this treatment break that will hopefully give me time to recover from all the treatments that have assailed my reserve over the last 14 months.
Bottom line - I'm hopeful that I will have the opportunity to get the bounce back in my step over the next few weeks. All objective information says that mild bone pain is the only specific symptom being caused by the cancer itself - off treatment my appetite is good, weight is stable (5 pounds over what I weighed at diagnosis) vital signs and labs normal and no fever. The abdominal pain? Much better yesterday after a laxative Tuesday night so probably proof positive that I am (or was) full of s**t.
So! I leave tomorrow for Colorado and Emma's graduation. Emma arrives for the summer at the end of May. My best childhood friend is visiting mid-June and my mother is coming back for my 51st birthday after that. Robert and I are planning to attend Ian's white coat ceremony. If that is at UT San Antonio it will be July 26th and we will spend the following week in Texas visiting. He is still waiting to hear from UT Southwestern and Oregon. If he winds up going to UT Southwestern the white coat ceremony will be in mid-August and we'd move the entire Texas trip to coincide. If he winds up going to Oregon we'll do the Texas trip as previously planned and head to Portland for a brief visit for the ceremony itself.
Typing all of this reminds me that I didn't expect to make it to Emma's graduation, much less Ian's white coat ceremony, and here I am. I am so very grateful to be here and well enough to attend and enjoy these events. Next up on the wish list are Hannah's senior volleyball season and Robert's Medicare eligibility birthday.
Thursday, May 7, 2009
What's Up With the Doc 55? - Now What?
This is a wait and see week - something I don't do very well with. I finished radiation therapy for my hip on Monday. Dana-Farber thinks there will be results from the genetic testing of my tissue this week. I see the oncologist Friday for Zometa and the big NOW WHAT? discussion.
My nausea has finally resolved and I can taste food again. I'm still puny - I can't stand for longer than about 10 minutes at a time. I successfully caught the horse for the vet on Monday but completely wore myself out in the process. I have been experiencing new pain at the base of my skull/top of my neck - new metastatic disease? I also have very small, itchy, red skin lesions on my face and arm. What's that about? If the genetic testing doesn't show anything that qualifies me for a clinical study and I don't have any metastases that require immediate local treatment my oncologist is going to want to steam ahead with systemic treatment. I won't make any decision about that until I see the results of a scan at least 8 weeks off treatment (May 26), which works well for letting me scoot out of town at the end of next week for Emma's graduation. If the scan shows the same rate of growth that we've seen over the last 8 months I'm likely to say no treatment until symptoms dictate it. Why waste the few options I have left now? Obviously, if things are progressing more quickly than they were on treatment I'll have to rethink that.
Mostly, I'm really tired of this. The last year has been really hard on me, my family and the people I work with and for. For the first time I find myself very sad that I can't be the person I used to be. I can't be the wife my husband wanted. I can't be the rock of Gibralter mother my children need. I can't be the physician my employer contracted for. Sometimes I just wish this cancer would go ahead and kill me fast and hard, rather than the slow death by a million nibbles that I seem to be facing.
Sorry to be a Debby Downer. That's just what's up with the doc this week.
Lisa
My nausea has finally resolved and I can taste food again. I'm still puny - I can't stand for longer than about 10 minutes at a time. I successfully caught the horse for the vet on Monday but completely wore myself out in the process. I have been experiencing new pain at the base of my skull/top of my neck - new metastatic disease? I also have very small, itchy, red skin lesions on my face and arm. What's that about? If the genetic testing doesn't show anything that qualifies me for a clinical study and I don't have any metastases that require immediate local treatment my oncologist is going to want to steam ahead with systemic treatment. I won't make any decision about that until I see the results of a scan at least 8 weeks off treatment (May 26), which works well for letting me scoot out of town at the end of next week for Emma's graduation. If the scan shows the same rate of growth that we've seen over the last 8 months I'm likely to say no treatment until symptoms dictate it. Why waste the few options I have left now? Obviously, if things are progressing more quickly than they were on treatment I'll have to rethink that.
Mostly, I'm really tired of this. The last year has been really hard on me, my family and the people I work with and for. For the first time I find myself very sad that I can't be the person I used to be. I can't be the wife my husband wanted. I can't be the rock of Gibralter mother my children need. I can't be the physician my employer contracted for. Sometimes I just wish this cancer would go ahead and kill me fast and hard, rather than the slow death by a million nibbles that I seem to be facing.
Sorry to be a Debby Downer. That's just what's up with the doc this week.
Lisa
Subscribe to:
Posts (Atom)
