As mentioned yesterday, the radiation will cause my hair to fall out in the areas where the beams are aimed -- near the crown of my head and at the base of my skull. That doesn't seem like a big deal to me and under normal circumstances I would leave my hair alone and try to cover the bald spots with all the stuff that's up there -- and there's a lot! Unfortunately, though, my decision when I turned 40 to color my hair (which until then I swore I would NEVER do) has come back to bite me in the butt. I can't color my hair if I'm getting radiation, because my scalp will be too sensitive. So what does one do when one has dark brown hair and has no idea how grey she really is?? She orders a wig and plans to cut her hair very short.
So, I will have my hair cut on November 16, which is the day before my treatments should begin. Over the course of the next four months, as my hair falls out and then eventually grows back in, I will discover exactly how grey I am and then I'll have to decide whether to color it again once I'm able to. Decisions, decisions. In the meantime, I ordered my wig, so in public at least I'll still have long hair, and it will look much better than mine ever did on a daily basis. And to those of you who may be wondering, I'll still be a brunette. No blonde or red hair for me. As a friend recently pointed out, I still need to match my eyebrows!
Thursday, October 30, 2008
Wednesday, October 29, 2008
Such fun!
Shortly after I arrived for my simulation yesterday -- after practically getting blown off my feet by the wind gusts here in NYC -- I was called in. Unfortunately, I then discovered that my treatments had been scheduled starting on November 11, on which day I will be somewhere in the Caribbean. No worries, the scheduler will work out a new plan. I change into a lovely blue robe, get set up on the table, am aligned perfectly and then the body molds are placed under me. As they expand they heat up, so it was nice and toasty laying there -- at least for a while. Then they draped the face mask material over me. It's a thick, fine mesh and they pinch it around your nose and press it down over your eyes and mouth. Consequently, as it dries, it pulls against your entire face, including your eyelids and mouth, until it feels like your eyeballs are getting squashed and you are practically unable to open your mouth.
Unbeknownest to me, they experience a computer glitch and can't get the scans done until it's fixed. Meanwhile, I'm laying on the table with this thing getting tighter and tighter over my face. I calm myself for quite some time by thinking of petting Spot (the greyhound who used to live with us) under his chin where his fur was soft. That works even through several times when I think I can't take it anymore, and then finally, I crack. I can get my mouth open enough to call out that I'm starting to panic, and the doctor who wouldn't/didn't return my calls comes over and says that it's going to take a little while since they are trying to line up all three radiation areas. She fails to mention at that point about the computer glitch, but suggests I take a few deep breaths as she pats my arm. I start panting through my mouth and I can feel my lips shaking, I can't open my eyes and I can barely move my jaw enough to swallow, but somehow I manage not to completely freak out. I don't know how much longer it was until I was told of the glitch and asked if removing the face mask would help me feel better or did I want some drugs? (How would I have taken the drugs without removing the mask??? Duh.) The mask is removed and the tech cuts out a hole for my nose. Once the glitch is repaired and we begin, the face mask is put back on and the nose hole makes a huge difference in how I feel in it. I still can't open my eyes and can barely open my lips, but I don't feel as trapped in it.
As I lay there, two techs take measurements and pull open my robe because they need to make marks on my stomach and sides with a magic marker. With the mask on, laying on this body mold, unable to see, I feel like a slab of meat. They aren't talking to me because they are reading numbers off to each other, and I feel slightly humiliated. I also kick myself for not doing stomach crunches for the past 25 years, especially since after they finishing drawing on me, they take photographs!! Now I feel really humiliated, but at least it will be difficult for anyone to tell who I am since my mask is still on. Afterward, they remove the mask and then give me four little tattoo dots on my sides and abdomen for lining up the markers when they radiate my ilium.
All told, it was about a 90-minute ordeal, and I'm not looking forward to splaying myself out on the table again, although the radiation for the ilium is one time only, so I guess I'll have a little modesty when they radiate my skull. I have to wait at least until early next week for my treatment schedule, since the scheduler is on vacation and the doctor didn't want to trust my schedule to the temp. I will have to take steriods when they do my pelvis, so I should look like a wrestler (or professional baseball player) for several weeks afterward. I've also decided that I will cut my hair short and get a wig since I'll lose my hair in two places from the radiation and it will be easier to care for my skin if I have less hair. I'll be certain to post a wig photo at a future date.
So that was my excitement for this week. Never a dull moment around here and so many new experiences. I'm so happy I can share them with you, because what fun would it be to keep these events all to ourselves?? :)
Unbeknownest to me, they experience a computer glitch and can't get the scans done until it's fixed. Meanwhile, I'm laying on the table with this thing getting tighter and tighter over my face. I calm myself for quite some time by thinking of petting Spot (the greyhound who used to live with us) under his chin where his fur was soft. That works even through several times when I think I can't take it anymore, and then finally, I crack. I can get my mouth open enough to call out that I'm starting to panic, and the doctor who wouldn't/didn't return my calls comes over and says that it's going to take a little while since they are trying to line up all three radiation areas. She fails to mention at that point about the computer glitch, but suggests I take a few deep breaths as she pats my arm. I start panting through my mouth and I can feel my lips shaking, I can't open my eyes and I can barely move my jaw enough to swallow, but somehow I manage not to completely freak out. I don't know how much longer it was until I was told of the glitch and asked if removing the face mask would help me feel better or did I want some drugs? (How would I have taken the drugs without removing the mask??? Duh.) The mask is removed and the tech cuts out a hole for my nose. Once the glitch is repaired and we begin, the face mask is put back on and the nose hole makes a huge difference in how I feel in it. I still can't open my eyes and can barely open my lips, but I don't feel as trapped in it.
As I lay there, two techs take measurements and pull open my robe because they need to make marks on my stomach and sides with a magic marker. With the mask on, laying on this body mold, unable to see, I feel like a slab of meat. They aren't talking to me because they are reading numbers off to each other, and I feel slightly humiliated. I also kick myself for not doing stomach crunches for the past 25 years, especially since after they finishing drawing on me, they take photographs!! Now I feel really humiliated, but at least it will be difficult for anyone to tell who I am since my mask is still on. Afterward, they remove the mask and then give me four little tattoo dots on my sides and abdomen for lining up the markers when they radiate my ilium.
All told, it was about a 90-minute ordeal, and I'm not looking forward to splaying myself out on the table again, although the radiation for the ilium is one time only, so I guess I'll have a little modesty when they radiate my skull. I have to wait at least until early next week for my treatment schedule, since the scheduler is on vacation and the doctor didn't want to trust my schedule to the temp. I will have to take steriods when they do my pelvis, so I should look like a wrestler (or professional baseball player) for several weeks afterward. I've also decided that I will cut my hair short and get a wig since I'll lose my hair in two places from the radiation and it will be easier to care for my skin if I have less hair. I'll be certain to post a wig photo at a future date.
So that was my excitement for this week. Never a dull moment around here and so many new experiences. I'm so happy I can share them with you, because what fun would it be to keep these events all to ourselves?? :)
Tuesday, October 28, 2008
Random thoughts
I learned today that a former neighbor has been diagnosed with breast cancer. A recent mamogram hadn't revealed anything, but a few months later she discovered a lump in one of her breasts and followed up. She is headed to MSKCC this week for a second opinion. She's picked the best place to determine the extent of the disease and what her treatment options are. I just wanted her to know that I'll be thinking about her. She's one tough woman, so I expect that she'll be ready to battle whatever is thrown at her.
Last week I learned that the man who had driven my morning bus into the city for the past six years killed himself. This occured while I was working from home. Apparently he was going through a divorce and had lost his fulltime job, and he told a friend that he felt he hadn't accomplished anything in his life. I don't know exactly how old he was, but with two sons in college, I would guess he was in his mid to late 40s. From what I understand, he had already lost his job the last time I rode the bus back in mid-September. I didn't know him well, but he seemed the same as always and never hinted that he wasn't going onto his job after dropping us all off. I'm still trying to wrap my head around it. It's such a shame that he felt so lost that there must have seemed to be no other option. There is no way that I could have known (we chatted, mainly about his sons, but nothing else), but I wish there was something I could have done or said. Now it's too late for everyone, and it seems like such a waste.
This stock market just doesn't seem to know which way to go. Today's early reports are expecting huge gains, although yesterday's pre-opening expectations were for a total bust. I imagine many of you are doing what we are doing: holding off on purchases, cutting back on eating out and entertainment, thinking long and hard about a budget for the upcoming holiday season, and worrying a bit about keeping our jobs and our health insurance. Personally, I am just riding this out. I had no idea that the market would fall this far, and I have no idea where the bottom is (if I did, I wouldn't be worrying about money because I'd be Warren Buffet). I wasn't smart enough to pull my money out back in January when the market started to head south, and there was no point in pulling it out when the market was already down. If I was holding cash, I'd sit on it a while longer, but since I'm still fully invested for my retirement (ha ha), I'm planning to wait this out. Theoretically, I've got 20 years until I need the money, so there's no point in sweating it now.
On the other hand, many people are worried about their jobs and rightly so. So far, we've been lucky here that our partners also have decided to ride this market out and not pull their investments from the fund. This would be a tough time to find another job, and it's health insurance that I am most worried about. It's difficult enough to pay the balance of the bills from MSKCC. If we didn't have excellent health insurance with out of network benefits, I wouldn't be able to go there at all. Thank goodness we found the NJ chemo facility (despite the problems I've had there), since it's saved us quite a bit in out of pocket payments since June. The economy will eventually turn around, and I hope that all of us can hang on until it does.
Last week I learned that the man who had driven my morning bus into the city for the past six years killed himself. This occured while I was working from home. Apparently he was going through a divorce and had lost his fulltime job, and he told a friend that he felt he hadn't accomplished anything in his life. I don't know exactly how old he was, but with two sons in college, I would guess he was in his mid to late 40s. From what I understand, he had already lost his job the last time I rode the bus back in mid-September. I didn't know him well, but he seemed the same as always and never hinted that he wasn't going onto his job after dropping us all off. I'm still trying to wrap my head around it. It's such a shame that he felt so lost that there must have seemed to be no other option. There is no way that I could have known (we chatted, mainly about his sons, but nothing else), but I wish there was something I could have done or said. Now it's too late for everyone, and it seems like such a waste.
This stock market just doesn't seem to know which way to go. Today's early reports are expecting huge gains, although yesterday's pre-opening expectations were for a total bust. I imagine many of you are doing what we are doing: holding off on purchases, cutting back on eating out and entertainment, thinking long and hard about a budget for the upcoming holiday season, and worrying a bit about keeping our jobs and our health insurance. Personally, I am just riding this out. I had no idea that the market would fall this far, and I have no idea where the bottom is (if I did, I wouldn't be worrying about money because I'd be Warren Buffet). I wasn't smart enough to pull my money out back in January when the market started to head south, and there was no point in pulling it out when the market was already down. If I was holding cash, I'd sit on it a while longer, but since I'm still fully invested for my retirement (ha ha), I'm planning to wait this out. Theoretically, I've got 20 years until I need the money, so there's no point in sweating it now.
On the other hand, many people are worried about their jobs and rightly so. So far, we've been lucky here that our partners also have decided to ride this market out and not pull their investments from the fund. This would be a tough time to find another job, and it's health insurance that I am most worried about. It's difficult enough to pay the balance of the bills from MSKCC. If we didn't have excellent health insurance with out of network benefits, I wouldn't be able to go there at all. Thank goodness we found the NJ chemo facility (despite the problems I've had there), since it's saved us quite a bit in out of pocket payments since June. The economy will eventually turn around, and I hope that all of us can hang on until it does.
Monday, October 27, 2008
So much to write, so little time
I've tried several times today to post an update, but it's been busy around the office today. (In this market, I suppose that's no surprise.) I'll try to write more this week, but here's a brief update.
The doctor at the NJ chemo facility prescribed twice the amount of Benadryl that MSKCC did without my realizing it. Consequently, within just a few minutes of the IV ending, I felt like I was going to pass out and then started to get lower back pain along with what I would consider restless leg syndrome. The nurse immediately told me that it was too much Benadryl. She ran some additional saline to try to clear some of it out before starting the Doxil and did another 30 minutes of saline after my treatment finished. Unfortunately, it was too late. I was exhausted Friday night but couldn't get to sleep until after 1 a.m. because of my back and the twitchy feeling in my legs. No position helped and neither did a heating pad. I was not too awake on Saturday.
We drove out to Pennsylvania to visit an old friend and her husband on Saturday, and it turned out to be a long and tiring day. Two hours out and two hours back in rain and wind, and even though the temperature was mainly in the low to mid-60s, I couldn't get warm. I was very glad to see her and so glad we went, but by the time we got home, I was done. I slept 12 hours Saturday night, woke up Sunday with lots of energy, and petered out by 11:30 a.m. I managed to get a few things accomplished (I painted pumpkins for the first time -- lots of fun) and then spent the rest of the day feeling tired and drained. After 8 hours of sleep, I'm still pretty tired but it was a work day, so we were up with the alarm at 4:15.
I go tomorrow to MSKCC for my simulation, where they will take additional CT scans of my brain and pelvis, put some tattoos on me for lining up the machines, make my face and body molds, and generally not let me have a good time. This all will take at least two hours, so tomorrow will be a long day.
I'll report back as soon as I can to let you know how I made out.
The doctor at the NJ chemo facility prescribed twice the amount of Benadryl that MSKCC did without my realizing it. Consequently, within just a few minutes of the IV ending, I felt like I was going to pass out and then started to get lower back pain along with what I would consider restless leg syndrome. The nurse immediately told me that it was too much Benadryl. She ran some additional saline to try to clear some of it out before starting the Doxil and did another 30 minutes of saline after my treatment finished. Unfortunately, it was too late. I was exhausted Friday night but couldn't get to sleep until after 1 a.m. because of my back and the twitchy feeling in my legs. No position helped and neither did a heating pad. I was not too awake on Saturday.
We drove out to Pennsylvania to visit an old friend and her husband on Saturday, and it turned out to be a long and tiring day. Two hours out and two hours back in rain and wind, and even though the temperature was mainly in the low to mid-60s, I couldn't get warm. I was very glad to see her and so glad we went, but by the time we got home, I was done. I slept 12 hours Saturday night, woke up Sunday with lots of energy, and petered out by 11:30 a.m. I managed to get a few things accomplished (I painted pumpkins for the first time -- lots of fun) and then spent the rest of the day feeling tired and drained. After 8 hours of sleep, I'm still pretty tired but it was a work day, so we were up with the alarm at 4:15.
I go tomorrow to MSKCC for my simulation, where they will take additional CT scans of my brain and pelvis, put some tattoos on me for lining up the machines, make my face and body molds, and generally not let me have a good time. This all will take at least two hours, so tomorrow will be a long day.
I'll report back as soon as I can to let you know how I made out.
Friday, October 24, 2008
A Decision and a Changed Opinion
After chasing Dr. Yamada's colleague for more than a week, I finally asked his coordinator if I could fax over my questions and have someone get back to me with the answers. Within 30 minutes, Dr. Yamada called and we discussed all of the issues I had raised, including adding treatment for the skull met that is bothering me. My conversation with him confirmed what I had felt from the beginning: If we were to choose a modality based on expertise alone, he leads the pack hands down. After speaking with Ed, we decided to go with Dr. Yamada and IGRT. I feel very comfortable with this decision and feel that I am in very goods hands -- with the exception of his colleague, but perhaps I won't have to deal with her very much.
His assistant called me at 7 p.m. last night to go over a few outstanding issues, and they are working on the insurance end of things. I have a simulation scheduled for next Tuesday, where they will create the plastic mask that holds my face and head in place for the treatment as well as the body pad for my pelvis. I believe the treatments will begin on November 17. With that in mind, I will be going for my scheduled Doxil treatment today, which will provide the three week "off" period that Dr. K was looking for.
The doctor we saw for the CyberKnife consultation coincidentally called last night to follow up and see if we had any additional questions. He had left a message before I got home from work and actually called again during dinner. I called him back today to relay our decision, and we spoke for 20 minutes. Although he lacks the experience of someone like Dr. Yamada, I came away very impressed with his patient skills. He stated that he felt the consultation did not go as well as he would have liked, which was why he was especially interested in following up with me. I told him it was the first time I had had a doctor reach out to me and I very much appreciated it. We discussed several aspects of my treatments, and he offered himself as a contact should I have any questions about any type of radiation therapy. I think he realized that he had not really been present during our meeting and made a serious effort to make up for that. I had made the return call dreading the conversation and actually ended up with a much more favorable opinion of him. After all, we all have our off days and doctors must have them as well. I told him that we had not ruled out CyberKnife as a future treatment option and that we would be in touch if necessary in the future.
So I feel like a large weight has been lifted off my back. I feel that I am in very competent hands and that Dr. Yamada and (most of) his team have my best interests in mind as they plan my treatment. Now to deal with the financial issues...
Thanks as always to everyone who kept us in mind as we went through this trying period. I feel I have a better understanding of the various options and I think getting a second opinion about treatments is a necessity. Now I can rest a little easier.
His assistant called me at 7 p.m. last night to go over a few outstanding issues, and they are working on the insurance end of things. I have a simulation scheduled for next Tuesday, where they will create the plastic mask that holds my face and head in place for the treatment as well as the body pad for my pelvis. I believe the treatments will begin on November 17. With that in mind, I will be going for my scheduled Doxil treatment today, which will provide the three week "off" period that Dr. K was looking for.
The doctor we saw for the CyberKnife consultation coincidentally called last night to follow up and see if we had any additional questions. He had left a message before I got home from work and actually called again during dinner. I called him back today to relay our decision, and we spoke for 20 minutes. Although he lacks the experience of someone like Dr. Yamada, I came away very impressed with his patient skills. He stated that he felt the consultation did not go as well as he would have liked, which was why he was especially interested in following up with me. I told him it was the first time I had had a doctor reach out to me and I very much appreciated it. We discussed several aspects of my treatments, and he offered himself as a contact should I have any questions about any type of radiation therapy. I think he realized that he had not really been present during our meeting and made a serious effort to make up for that. I had made the return call dreading the conversation and actually ended up with a much more favorable opinion of him. After all, we all have our off days and doctors must have them as well. I told him that we had not ruled out CyberKnife as a future treatment option and that we would be in touch if necessary in the future.
So I feel like a large weight has been lifted off my back. I feel that I am in very competent hands and that Dr. Yamada and (most of) his team have my best interests in mind as they plan my treatment. Now to deal with the financial issues...
Thanks as always to everyone who kept us in mind as we went through this trying period. I feel I have a better understanding of the various options and I think getting a second opinion about treatments is a necessity. Now I can rest a little easier.
Wednesday, October 22, 2008
Still deciding...
We met with the radiation oncologist at the CyberKnife center and were not overly impressed with him. He checked his watch at least four times during the 40 minutes or so he spent with us, checked his Blackberry at least five times and answered his cell phone once. He seemed very hesitant to compare CyberKnife with IGRT, especially after telling us that Dr. Yamada is a pioneer in the IGRT field.
He also said that studies had shown that more regular (conformal) radiation treatments at a lower dose results in better pain management for bone mets than a single treatment. Therefore, he was recommending 10 treatments to the met in my pelvic bone vs. the MSKCC recommendation of one treatment. I have since done research that shows that there is not a significant benefit to performing multiple treatments vs. a single treatment, so if we decide to go with the treatment at Riverview, he is going to have to show me his studies. Otherwise, I will agree to no more than five treatments, but preferably one.
With respect to the clivus, he recommended the same number of treatments as with IGRT: five. If they do the other skull met at the top of my head that has been bothering me, that would be an additional three treatments. They may be able to perform them on the same day, but are afraid I would be on the table too long for comfort.
At Riverview, the radiation oncologist works with a surgeon specializing in the field of the met, so we had a consultation with a neurosurgeon on Monday. (In a strange coincidence, he was the same neurosurgeon who examined my dad in the emergency room after he passed out and hit his head back in October 2005 -- a month before he died of heart failure.) We told him we were not impressed with the other doctor and that we felt he hadn't sold us on CyberKnife vs. IGRT. We discussed the advantages that CK has in better targeting the tumor and being able to track movement during the treatment (which IGRT cannot do). He answered our questions competently and told us that he would be responsible for outlining the area of the tumors to be treated with CK. The other doctor would determine the amount of radiation to use and the number of treatments I would have. He assured us that the radiation oncologist was a superb doctor and very competent.
At this point, I think we are both leaning toward CK because of its ability to adjust if I move my head during treatment. If we weren't discussing my brain, maybe this advantage wouldn't mean quite as much, but there is too much to avoid in the brain so the better the accuracy, the better chance of avoiding the brain stem, pituitary gland, nerves, etc. There is also a good possibility that the treatment may be covered in-network. We won't know until the end of this week if the CK will be covered, as Oxford asked the doctor's office to supply additional clinical information. If it is not, it would be treated the same way as the IGRT treatments would be treated at MSKCC -- out of network where Oxford would pay a portion of the cost.
In either case, the plan would be to do all the set up work (new MRI/CT images of my head and pelvis, create the face mask to hold my head in place and the body pad that would hold my hip in place) prior to our leaving for our cruise and begin the treatments as soon as we return. Therefore, I'm going to go ahead with my Doxil treatment on Friday, as I will still have the three weeks off prior to radiation treatment that Dr. K wanted. I will have to wait three weeks after the radiation treatments are finished before having another Doxil treatment. I can continue Zometa infusions during radiation treatment.
So we are getting closer to a decision, but it's been difficult. I can't believe that I'm even discussing having radiation treatments to my brain, but I feel I have no choice. I do believe the tumor has been there for some time, as a comparison of the most recent brain MRI to the one done back in January 2006 shows something in the clivus, although the neurosurgeon thought that the most recent scan shows a stronger signal. This information brings up another issue: it seems my doctors have been reading the radiologists' reports but not looking at my scans. In the future, I will refuse to see a doctor until he or she has actually looked at my scans.
I just spoke with Dr. K, who seems a bit put out that we are seriously considering CK. She is contacting Dr. Yamada's colleague to find out what the advantages are of one treatment vs. the other -- something I have been trying to find out for a week now but haven't had any success in getting the doctor to return my calls. She suggested that if the treatment being in-network was an important issue for us, we should fight with the insurance company to have the IGRT paid in full since it is unlikely there is an IGRT expert in-network who has experience with treating the clivus. Do I really need to add fighting with the insurance company to my plate? Isn't that something the doctor's office should address? I'm about ready to throw my hands up with these doctors. I'm finding all of them more frustrating than helpful.
I'm signing off now so I can let off some steam.
He also said that studies had shown that more regular (conformal) radiation treatments at a lower dose results in better pain management for bone mets than a single treatment. Therefore, he was recommending 10 treatments to the met in my pelvic bone vs. the MSKCC recommendation of one treatment. I have since done research that shows that there is not a significant benefit to performing multiple treatments vs. a single treatment, so if we decide to go with the treatment at Riverview, he is going to have to show me his studies. Otherwise, I will agree to no more than five treatments, but preferably one.
With respect to the clivus, he recommended the same number of treatments as with IGRT: five. If they do the other skull met at the top of my head that has been bothering me, that would be an additional three treatments. They may be able to perform them on the same day, but are afraid I would be on the table too long for comfort.
At Riverview, the radiation oncologist works with a surgeon specializing in the field of the met, so we had a consultation with a neurosurgeon on Monday. (In a strange coincidence, he was the same neurosurgeon who examined my dad in the emergency room after he passed out and hit his head back in October 2005 -- a month before he died of heart failure.) We told him we were not impressed with the other doctor and that we felt he hadn't sold us on CyberKnife vs. IGRT. We discussed the advantages that CK has in better targeting the tumor and being able to track movement during the treatment (which IGRT cannot do). He answered our questions competently and told us that he would be responsible for outlining the area of the tumors to be treated with CK. The other doctor would determine the amount of radiation to use and the number of treatments I would have. He assured us that the radiation oncologist was a superb doctor and very competent.
At this point, I think we are both leaning toward CK because of its ability to adjust if I move my head during treatment. If we weren't discussing my brain, maybe this advantage wouldn't mean quite as much, but there is too much to avoid in the brain so the better the accuracy, the better chance of avoiding the brain stem, pituitary gland, nerves, etc. There is also a good possibility that the treatment may be covered in-network. We won't know until the end of this week if the CK will be covered, as Oxford asked the doctor's office to supply additional clinical information. If it is not, it would be treated the same way as the IGRT treatments would be treated at MSKCC -- out of network where Oxford would pay a portion of the cost.
In either case, the plan would be to do all the set up work (new MRI/CT images of my head and pelvis, create the face mask to hold my head in place and the body pad that would hold my hip in place) prior to our leaving for our cruise and begin the treatments as soon as we return. Therefore, I'm going to go ahead with my Doxil treatment on Friday, as I will still have the three weeks off prior to radiation treatment that Dr. K wanted. I will have to wait three weeks after the radiation treatments are finished before having another Doxil treatment. I can continue Zometa infusions during radiation treatment.
So we are getting closer to a decision, but it's been difficult. I can't believe that I'm even discussing having radiation treatments to my brain, but I feel I have no choice. I do believe the tumor has been there for some time, as a comparison of the most recent brain MRI to the one done back in January 2006 shows something in the clivus, although the neurosurgeon thought that the most recent scan shows a stronger signal. This information brings up another issue: it seems my doctors have been reading the radiologists' reports but not looking at my scans. In the future, I will refuse to see a doctor until he or she has actually looked at my scans.
I just spoke with Dr. K, who seems a bit put out that we are seriously considering CK. She is contacting Dr. Yamada's colleague to find out what the advantages are of one treatment vs. the other -- something I have been trying to find out for a week now but haven't had any success in getting the doctor to return my calls. She suggested that if the treatment being in-network was an important issue for us, we should fight with the insurance company to have the IGRT paid in full since it is unlikely there is an IGRT expert in-network who has experience with treating the clivus. Do I really need to add fighting with the insurance company to my plate? Isn't that something the doctor's office should address? I'm about ready to throw my hands up with these doctors. I'm finding all of them more frustrating than helpful.
I'm signing off now so I can let off some steam.
Thursday, October 16, 2008
Brief note
Just wanted to let you know that we had our consultation with the doctor at Riverview regarding CyberKnife today and have some decisions to make. We had anticipated that after hearing CyberKnife was an option our decision would be a slam-dunk, but it is not. I will post again once we've made a decision.
Monday, October 13, 2008
Not a fun weekend
Saturday morning I woke up very nauseated and achy. Had some dry toast, took a Zantac 75 and went back to sleep for two hours (despite having just slept for 10 hours!). I finally got up at noon and managed to get down some more dry toast, tea, some applesauce and had some cereal for dinner. Upon laying down to go to sleep (again), I started up my cough, which has been plaguing me for about a year now and has gotten much worse over the past few months, and reached the point of vomiting. Not my favorite thing to do, as I've written before. After another full night's sleep, I felt better yesterday, but have been taking it slow on the food front.
I wrote Dr. K today and asked her to have an ENT at the hospital review my films for any abnormalities in the sinuses, throat and esophagus. I would like someone to at least take a look, as this cough is not going away. I will let you know the outcome.
Other than that exciting adventure, things have been quiet. The next event is our CyberKnife consultation on Thursday. I will update you after that.
I wrote Dr. K today and asked her to have an ENT at the hospital review my films for any abnormalities in the sinuses, throat and esophagus. I would like someone to at least take a look, as this cough is not going away. I will let you know the outcome.
Other than that exciting adventure, things have been quiet. The next event is our CyberKnife consultation on Thursday. I will update you after that.
Friday, October 10, 2008
The end of another crazy week
Just wanted to update you on the happenings since Tuesday. I had my first Zometa treatment today. It was very easy -- a quick check of my bloodwork, then a 20-minute infusion. I asked the doctor why I needed to do this by infusion rather than taking a pill (like Boniva or Fosamex). It turns out that Boniva is 50 times as strong as Fosamex and Zometa is 1000 times as strong as Fosamex. Guess that answered my question. It's used as a treatment for bone metastases regardless of the original cancer diagnosis and was first tried in breast cancer patients. The benefits were so apparent that it's now a standard treatment for bone mets.
I received a call today from the CyberKnife center at Riverview Medical Center here in NJ, and I have a consultation next Thursday. From what I have read, this is a better way to go than IGRT as it is more precise and delivers stereotactic radiation managed by computer via rotating arms. The radiation is delivered from all sides in small doses and can truly pinpoint the tumor while sparing as much of the healthy surrounding tissue as possible. As the cherry on the sundae, the doctor is in-network!
I've contacted Dr. Yamada's office to discuss the advantages of IGRT over CyberKnife and vice versa and also to let them know that I'm seeking a second opinion. I didn't want them to plan out an entire schedule for me only to have me put it on hold. I also contacted Dr. K's assistant so she will know what is going on. As I found out, I really need to keep her in the loop.
So, some progress is being made in the decision about how to best treat my clivus met. I'm not looking forward to radiation in any form, but I have no choice here. As the doctor at the oncology clinic said today, we need to make a pre-emptive strike on this tumor before it causes serious, permanent nerve damage.
Have a great weekend everyone!
I received a call today from the CyberKnife center at Riverview Medical Center here in NJ, and I have a consultation next Thursday. From what I have read, this is a better way to go than IGRT as it is more precise and delivers stereotactic radiation managed by computer via rotating arms. The radiation is delivered from all sides in small doses and can truly pinpoint the tumor while sparing as much of the healthy surrounding tissue as possible. As the cherry on the sundae, the doctor is in-network!
I've contacted Dr. Yamada's office to discuss the advantages of IGRT over CyberKnife and vice versa and also to let them know that I'm seeking a second opinion. I didn't want them to plan out an entire schedule for me only to have me put it on hold. I also contacted Dr. K's assistant so she will know what is going on. As I found out, I really need to keep her in the loop.
So, some progress is being made in the decision about how to best treat my clivus met. I'm not looking forward to radiation in any form, but I have no choice here. As the doctor at the oncology clinic said today, we need to make a pre-emptive strike on this tumor before it causes serious, permanent nerve damage.
Have a great weekend everyone!
Wednesday, October 08, 2008
Radiation
I don't feel entirely comfortable updating you at this point because I don't feel that I have done enough research to properly inform you of my choices. However, I know that some of you were waiting to hear about the outcome of our appointment yesterday, so here it is.
Dr. Yamada is recommending five high-intensity treatments to my clivus using IGRT (Image Guided Radiation Therapy) and one treatment using regular radiation to my pelvic bone. He is suggesting leaving the other skull met (the one near the crown of my head) alone for now since there is no impact on the brain at this time.
He is concentrating on treating the clivus because there are nerves very close to it that affect the face and eyes. His concern is that any damage that may be done by the growth of the tumor could be permanent, so he would prefer to try to destroy the tumor before I feel any effects. The potential side effects of the radiation treatment -- in addition to the usual issues of swelling at the site of the tumor, sensitive skin, fatigue, and hair loss in the radiated area -- over the long term are fractures of the clivus, cancer caused by the radiation, and damage to the pituitary gland which may result in hypothyroidism (controlled with medication). I thought I had included a link to an MRI image of where the clivus is located, but apparently I didn't so here it is: http://rad.usuhs.mil/rad/radbrowser2/index2.html With any luck, that will take you directly to the side image of a head and if you move your mouse around the image, you will see the different areas. If it takes you to the main page, you want Head & Neck, then MRI, then Sagittal view.
I asked him about using RFA (radio-frequency ablation) for the pelvic tumor rather than radiation, and his response was that if the radiation didn't work, RFA would still be an option. It is my understanding that RFA is a better option for bone mets, but I need to do some re-reading. I believe his thinking is that the less invasive option is the better one, while I think the option that has the fewer long-term potential side effects is the better one, regardless of the level of invasiveness (if that's a word). Anyway, this is one of the areas where I don't really feel knowledgeable enough to state what I think is best. There is more reading to be done.
I can't have any radiation within a week of having Doxil, because that chemotherapy does not react well with radiation. So, his nurse practioner will contact Dr. K's office to discuss a possible schedule for treatment. My guess is that I may go in the last week of October to have scans done and a face mask made (to hold my head completely still during treatment), and the week of treatments will be performed in mid-November after our vacation. Don't hold me to that, though. He said it's important to do the treatment, but it's not so urgent that it needs to be done next week. He said we should definitely plan to take our vacation and they will work out the scheduling details.
My Zometa treatments will begin on Friday and are supposed to be done every three weeks. That means I can get one more before we leave and will be due for another a week after we return. I don't think I need any bloodwork prior to this treatment, and the infusion is 30 minutes.
On a final note, 20 years ago today at 2:00 p.m., Ed and I exchanged our wedding vows and started off on "Ed and Karen's Excellent Adventure." It's been a trip full of beautiful vistas, mudslides, sunny skies, dirt roads, soft breezes, snowstorms, and calm seas, and somehow we have made it through the good and bad times mostly in one piece. Although there have been moments when we thought we wouldn't make it through another day (let alone another year), overall -- and after all -- we feel compelled to say that life is good. The past few years -- especially this year -- have been difficult due to my health, but we have risen to the occasion and try to fight this as a team. I know it hasn't been easy on Ed, but he keeps on doing and fighting and questioning and soothing and prodding, and I honestly don't know what I would have done or would do without him. So here's a toast to us!
Dr. Yamada is recommending five high-intensity treatments to my clivus using IGRT (Image Guided Radiation Therapy) and one treatment using regular radiation to my pelvic bone. He is suggesting leaving the other skull met (the one near the crown of my head) alone for now since there is no impact on the brain at this time.
He is concentrating on treating the clivus because there are nerves very close to it that affect the face and eyes. His concern is that any damage that may be done by the growth of the tumor could be permanent, so he would prefer to try to destroy the tumor before I feel any effects. The potential side effects of the radiation treatment -- in addition to the usual issues of swelling at the site of the tumor, sensitive skin, fatigue, and hair loss in the radiated area -- over the long term are fractures of the clivus, cancer caused by the radiation, and damage to the pituitary gland which may result in hypothyroidism (controlled with medication). I thought I had included a link to an MRI image of where the clivus is located, but apparently I didn't so here it is: http://rad.usuhs.mil/rad/radbrowser2/index2.html With any luck, that will take you directly to the side image of a head and if you move your mouse around the image, you will see the different areas. If it takes you to the main page, you want Head & Neck, then MRI, then Sagittal view.
I asked him about using RFA (radio-frequency ablation) for the pelvic tumor rather than radiation, and his response was that if the radiation didn't work, RFA would still be an option. It is my understanding that RFA is a better option for bone mets, but I need to do some re-reading. I believe his thinking is that the less invasive option is the better one, while I think the option that has the fewer long-term potential side effects is the better one, regardless of the level of invasiveness (if that's a word). Anyway, this is one of the areas where I don't really feel knowledgeable enough to state what I think is best. There is more reading to be done.
I can't have any radiation within a week of having Doxil, because that chemotherapy does not react well with radiation. So, his nurse practioner will contact Dr. K's office to discuss a possible schedule for treatment. My guess is that I may go in the last week of October to have scans done and a face mask made (to hold my head completely still during treatment), and the week of treatments will be performed in mid-November after our vacation. Don't hold me to that, though. He said it's important to do the treatment, but it's not so urgent that it needs to be done next week. He said we should definitely plan to take our vacation and they will work out the scheduling details.
My Zometa treatments will begin on Friday and are supposed to be done every three weeks. That means I can get one more before we leave and will be due for another a week after we return. I don't think I need any bloodwork prior to this treatment, and the infusion is 30 minutes.
On a final note, 20 years ago today at 2:00 p.m., Ed and I exchanged our wedding vows and started off on "Ed and Karen's Excellent Adventure." It's been a trip full of beautiful vistas, mudslides, sunny skies, dirt roads, soft breezes, snowstorms, and calm seas, and somehow we have made it through the good and bad times mostly in one piece. Although there have been moments when we thought we wouldn't make it through another day (let alone another year), overall -- and after all -- we feel compelled to say that life is good. The past few years -- especially this year -- have been difficult due to my health, but we have risen to the occasion and try to fight this as a team. I know it hasn't been easy on Ed, but he keeps on doing and fighting and questioning and soothing and prodding, and I honestly don't know what I would have done or would do without him. So here's a toast to us!
Thursday, October 02, 2008
October already
Where has this year gone? I can't believe it's October already. Seems like yesterday that I was planning for our Europe trip. I guess we'll have to start packing for our Liberty of the Seas cruise soon. I'm thinking we'll probably just take the same things we took to Las Vegas and Texas since we've decided to skip formal nights on this cruise. It will be nice to soak up the Caribbean sun while it's chilly at home in November.
I'm hanging in there but it hasn't been wonderful. I had a headache for three days and nothing I took helped it. The headache is gone now but I still have the drippy sinuses and the cough, and today my stomach is upset. I still have to watch for fever and infections, because it can take up to two to three weeks for my blood counts to drop. What fun. Other than that, I'm feeling okay, getting lots of sleep (9-11 hours a night), and enjoying my working at home. Next Tuesday we have an appointment with the other radiation oncologist, whom Dr. K has given her seal of approval. I'm still waiting to hear from my local oncologist about the Zometa treatment and setting up future Doxil treatments in-network.
I'll be back to report on the meeting with the radiation oncologist.
I'm hanging in there but it hasn't been wonderful. I had a headache for three days and nothing I took helped it. The headache is gone now but I still have the drippy sinuses and the cough, and today my stomach is upset. I still have to watch for fever and infections, because it can take up to two to three weeks for my blood counts to drop. What fun. Other than that, I'm feeling okay, getting lots of sleep (9-11 hours a night), and enjoying my working at home. Next Tuesday we have an appointment with the other radiation oncologist, whom Dr. K has given her seal of approval. I'm still waiting to hear from my local oncologist about the Zometa treatment and setting up future Doxil treatments in-network.
I'll be back to report on the meeting with the radiation oncologist.
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