Chemo Treatments 2.11 and 2.12 and Decision Time...
Update Added at Bottom
I guess you have been wondering where I am been and probably have been concerned with how I have been doing. Simply put, its been a couple of miserable weeks and while I have been chained to this apartment, I haven't had any motivation to even talk to people on the phone, let alone update my blog. Nothing has come easy for me, what energy I have I saved to try to do some chores around the house to help out Beth. Basically, I try to get the kitchen clean for her so making dinner will be easier. I did get to the office on Tuesday for a couple of hours in the afternoon but even that ended up being too much. My energy crashed as soon as I got home and my appetite was weak. I just laid out in the recliner until bed yet ended up having a difficult time sleeping. Sleeping has been a problem and I think a lot of comes from both breathing issues and lack of getting out of this apartment and getting a little excercise. But, there is some good news, things seem to be improving a bit so here I am getting you all updated.
Unfortunately, I don't recall much details such as my vitals from chemo treatment 2.11. What I can say is I got through it. One of my biggest issues leading up to the that treatment was pretty painful stomach and abdomen cramps with severe diarrhea. I was on this antibiotic (Spectracef) for about 10 days and it seemed to be the culprit. Dr. Chen was concerned that I may have killed off the good intestinal flora from the use of the antibiotics in conjuction with the chemo and so ordered up some tests. As it turned out, I tested positive for Clostridium Difficile(C. Diff.) which is both common for us cancer patients and highly toxic. I suggest reading the link if you want to learn more about this painful experience. Dr. Chen took me off that antibiotic and put me on another to deal with the C. Diff. and get the good flora restored. Dr. Sodhi also put me on this stronger probiotic to get that good flora restored faster. At this time, I no longer have the cramps and pain but the guts have been tender to the touch. The diarrhea has improved but I am not quite solid yet. So as you can see, its been a tough go lately.
I completed the last chemo treatment of the second cycle , 2.12, yesterday. My vitals were a little shaky with my bp at 118/80, blood O2 at 96%, pulse elevated at 104 bpm, and weight down to 196 lbs. I only got a couple of hours sleep the night before even with taking a Lunesta and Benadryl before bed so that left me quite a mess and may have stressed my vitals a bit. I was put into the group room on a day I could have used a private room but it worked out fairly well since everyone was asleep and quite. With the sun shining warmly through the windows and the benadryl running through the veins, it was easy to sleep. Nurse Daravan worked with me this time and she hooked me in and collected the blood samples for the lab. This other patient I have gotten to know, Susan, came in and she is just as chatty as Judy. So I was held in a conversation I didn't feel like being in and I think it disturbed other patients trying to snooze off the benadryl. But what can you do? Susan is a nice lady who has been coming to the clinic for 3 years for breast cancer. She has had a couple of surgeries but still can't shake the pesky disease. While its easy to feel bad for her, she seems to be living well with her disease. Modern technology and medicine has done well against breast cancer, but there are those few that still can't get clear of the disease. Maybe they don't do enough with their lifestyles outside of medical treatment but I don't walk their shoes so I won't judge. However, I have learned that diet is very important when dealing with breast cancer since estrogen plays a major role in its development and persistance. Its even more complicated then going straight vegan.
I am still on Leukine, the white blood cell booster drug, so my blood cell counts came back in the good range. I will be doing my 3rd weekend of self inflicted Leukine shots to the stomach and that kind of sucks. I have no problems with needles but there is a little pain associated with the shots and I get a little shaky as I stick myself. I do ice the area first but as I inject the medicine, it hurts a bit. According to Daravan, Dr. Chen will keep me on this drug for a while so I will just have to deal with it. Not only does it boost the white blood cells, its has antitumor effects so its a a good multitasker, as Alton Brown on the Food Network likes to say. It was Avastin week so I got started on that first. Dr. Chen came in to see me. Since it was a tough week, I turned over the weekly bitch form and detailed my issues for each day of the week. With this being the last treatment of the cycle and a possible break coming, I thought I would give Dr. Chen some serious detail. So when he came in, the backside of the form was facing up on his clipboard and we went through each day of the week. We discussed everything and he gave me the exam. He said my breathing sounded about the same as the last couple of weeks. But in review of what I been through and how my current vitals were looking, he wasn't ready to commit to a break and starting me on Tarceva. The options to decide between is giving me a break off of chemo until after the wedding and putting me on Tarceva in conjuction with Avastin or to get started next week on the 3rd cycle and changing up the chemo regiment a bit to throw a curve ball at the cancer. Without getting a PET scan, which my insurance says is medically unnecessary and I have appealed, there is no way of knowing if some of my latest complications are from disease progression or just all the complications from a lowered immune system, chemo side effects, and tough allergy season. Based off the latest CT scan from late March, certain ways my body does feel, and my desire to get the break, I think I could use the break. However, Dr. Chen wants more information before making the decision. So after completing this post, I will be off to Swedish Hospital for more chest xrays and then will be meeting Dr. Chen late this afternoon with the results. He is looking to see if the pleural and pericardial effusions have increased causing the increased heart rate. If the pericardial effusion, fluid around the heart, has increased, that maybe a sign of increased cancer activity, or may not. If the pleural effusion, fluid around the lungs, has increased, that could be a result of cancer activity, infection (minor bronchitis or pneumonia), or still allergies. An increase in the plueral effusion may lead me to get it surgically drained soon.
As you can see, without the PET scan, its still even a guess for the professionals and its hard to believe that the insurance companies call it surveillance monitoring and not medically necessary. From my point of view, especially for cancer, surveillance monitoring is medically necessary! I am pretty sure I will win my appeal, I have a good independent company advocating for me, but it will take a while and we need some answers now. I need an answer now because I need a break. And quite frankly, regardless of the xrays, I will be insisting to Dr. Chen I get the break. I need to feel good for a while to renew my fighting spirit, refresh my mind, improve my attitude, and be ready for a certain wedding date coming up real soon. I strongly feel I owe it to myself and really Beth. She has seen me in bad shape long enough and would appreciate a strong man around the house. I have my supplements and herbs, a good vegan diet, and at least Avastin and antibiotics to fill the gap during a break. So its not like I will be leaving myself completely vulnerable to the cancer rebounding and taking over during the break. Also, I am accutely aware of where the cancer is in body and will be self monitoring those areas during the break. Any sign of trouble, I will be in touch with Dr. Chen and we will go from there. Maybe with some luck, I can get the PET scan approved during the break and we will have some good information going into the 3rd cycle.
On a final note, I have started the using the herbal drug Dr. Gignac prescribed to use through a nebulizer. He is pretty excited about this stuff and says it will be highly beneficial for lung cancer patients and for patients with other cancers that have metasticized to the lungs. The nurses told me he kept asking if I have been around this week to pick some up (it came in Monday). He is very interested in seeing how it will work for me so I guess that makes me the test subject. Early trials with the lab that makes it has shown good benefits. He made sure to see me while getting chemo to make sure I get it. In fact, he had Jess, the receptionist, put it out for me in case I didn't finish with chemo until after 5 PM and the clinic pharmacy was closed. I told me him I already got the nebulizer (Thank you Rachel, Beth's sister who picked it up at a discount rate!) and was ready to put it to use. I started this morning, a little strange, it will take some getting used too. I will use this twice a day for at least a month, probably longer. This medicine is prescription only and costs $120 for a month supply and of course, the insurance won't cover it. Maybe if and when it gets FDA approval, but then again, with the FDAs recent claims on medical marijuana, their stalling of Plan B emergency contraception pills for over the counter use even though the scientific panel approves it yet FDA appointed officials citing unscientific claims of increased promiscuous behavior, the hubbub over Vioxx safety, among other questionable issues and FDA behavior, I don't feel confident in their evalutions of drug safety and efficacy. In fact, I charge them with ideology and big pharma influencing their ability to evaluate what is and isn't good science. If I felt better to stand on my soapbox, I could write page after page of rants on just the FDA citing several articles I have been bookmarking over that last few months. However, ranting creates negative energy, something I don't want right now. But it does relieve built up tension so you might get it soon!
So I am now running behind to go get that chest xray so I don't have time to edit this blog entry. So I will just post it and you will have to work through the mistakes, I don't think you will mind...
Update: I got the results of the chest xray and it showed a possible increase in the fluid around the heart. Dr. Chen faxed the results to Dr. Sytman and I got an appointment for an ultrasound on the heart scheduled for Monday. I will probably have a follow up with Dr. Sytman to determine a course of action after that. It is possible that I may have to have it surgically drained which is pretty invasive requiring a hospital stay of 2-3 days. If so, hopefully it can be done well before the wedding. Dr. Chen is still mum on what do next week, I am scheduled for Thursday in case the decision is to resume chemo. If not, I will just get a vitamin infusion.
Update Added at Bottom
I guess you have been wondering where I am been and probably have been concerned with how I have been doing. Simply put, its been a couple of miserable weeks and while I have been chained to this apartment, I haven't had any motivation to even talk to people on the phone, let alone update my blog. Nothing has come easy for me, what energy I have I saved to try to do some chores around the house to help out Beth. Basically, I try to get the kitchen clean for her so making dinner will be easier. I did get to the office on Tuesday for a couple of hours in the afternoon but even that ended up being too much. My energy crashed as soon as I got home and my appetite was weak. I just laid out in the recliner until bed yet ended up having a difficult time sleeping. Sleeping has been a problem and I think a lot of comes from both breathing issues and lack of getting out of this apartment and getting a little excercise. But, there is some good news, things seem to be improving a bit so here I am getting you all updated.
Unfortunately, I don't recall much details such as my vitals from chemo treatment 2.11. What I can say is I got through it. One of my biggest issues leading up to the that treatment was pretty painful stomach and abdomen cramps with severe diarrhea. I was on this antibiotic (Spectracef) for about 10 days and it seemed to be the culprit. Dr. Chen was concerned that I may have killed off the good intestinal flora from the use of the antibiotics in conjuction with the chemo and so ordered up some tests. As it turned out, I tested positive for Clostridium Difficile(C. Diff.) which is both common for us cancer patients and highly toxic. I suggest reading the link if you want to learn more about this painful experience. Dr. Chen took me off that antibiotic and put me on another to deal with the C. Diff. and get the good flora restored. Dr. Sodhi also put me on this stronger probiotic to get that good flora restored faster. At this time, I no longer have the cramps and pain but the guts have been tender to the touch. The diarrhea has improved but I am not quite solid yet. So as you can see, its been a tough go lately.
I completed the last chemo treatment of the second cycle , 2.12, yesterday. My vitals were a little shaky with my bp at 118/80, blood O2 at 96%, pulse elevated at 104 bpm, and weight down to 196 lbs. I only got a couple of hours sleep the night before even with taking a Lunesta and Benadryl before bed so that left me quite a mess and may have stressed my vitals a bit. I was put into the group room on a day I could have used a private room but it worked out fairly well since everyone was asleep and quite. With the sun shining warmly through the windows and the benadryl running through the veins, it was easy to sleep. Nurse Daravan worked with me this time and she hooked me in and collected the blood samples for the lab. This other patient I have gotten to know, Susan, came in and she is just as chatty as Judy. So I was held in a conversation I didn't feel like being in and I think it disturbed other patients trying to snooze off the benadryl. But what can you do? Susan is a nice lady who has been coming to the clinic for 3 years for breast cancer. She has had a couple of surgeries but still can't shake the pesky disease. While its easy to feel bad for her, she seems to be living well with her disease. Modern technology and medicine has done well against breast cancer, but there are those few that still can't get clear of the disease. Maybe they don't do enough with their lifestyles outside of medical treatment but I don't walk their shoes so I won't judge. However, I have learned that diet is very important when dealing with breast cancer since estrogen plays a major role in its development and persistance. Its even more complicated then going straight vegan.
I am still on Leukine, the white blood cell booster drug, so my blood cell counts came back in the good range. I will be doing my 3rd weekend of self inflicted Leukine shots to the stomach and that kind of sucks. I have no problems with needles but there is a little pain associated with the shots and I get a little shaky as I stick myself. I do ice the area first but as I inject the medicine, it hurts a bit. According to Daravan, Dr. Chen will keep me on this drug for a while so I will just have to deal with it. Not only does it boost the white blood cells, its has antitumor effects so its a a good multitasker, as Alton Brown on the Food Network likes to say. It was Avastin week so I got started on that first. Dr. Chen came in to see me. Since it was a tough week, I turned over the weekly bitch form and detailed my issues for each day of the week. With this being the last treatment of the cycle and a possible break coming, I thought I would give Dr. Chen some serious detail. So when he came in, the backside of the form was facing up on his clipboard and we went through each day of the week. We discussed everything and he gave me the exam. He said my breathing sounded about the same as the last couple of weeks. But in review of what I been through and how my current vitals were looking, he wasn't ready to commit to a break and starting me on Tarceva. The options to decide between is giving me a break off of chemo until after the wedding and putting me on Tarceva in conjuction with Avastin or to get started next week on the 3rd cycle and changing up the chemo regiment a bit to throw a curve ball at the cancer. Without getting a PET scan, which my insurance says is medically unnecessary and I have appealed, there is no way of knowing if some of my latest complications are from disease progression or just all the complications from a lowered immune system, chemo side effects, and tough allergy season. Based off the latest CT scan from late March, certain ways my body does feel, and my desire to get the break, I think I could use the break. However, Dr. Chen wants more information before making the decision. So after completing this post, I will be off to Swedish Hospital for more chest xrays and then will be meeting Dr. Chen late this afternoon with the results. He is looking to see if the pleural and pericardial effusions have increased causing the increased heart rate. If the pericardial effusion, fluid around the heart, has increased, that maybe a sign of increased cancer activity, or may not. If the pleural effusion, fluid around the lungs, has increased, that could be a result of cancer activity, infection (minor bronchitis or pneumonia), or still allergies. An increase in the plueral effusion may lead me to get it surgically drained soon.
As you can see, without the PET scan, its still even a guess for the professionals and its hard to believe that the insurance companies call it surveillance monitoring and not medically necessary. From my point of view, especially for cancer, surveillance monitoring is medically necessary! I am pretty sure I will win my appeal, I have a good independent company advocating for me, but it will take a while and we need some answers now. I need an answer now because I need a break. And quite frankly, regardless of the xrays, I will be insisting to Dr. Chen I get the break. I need to feel good for a while to renew my fighting spirit, refresh my mind, improve my attitude, and be ready for a certain wedding date coming up real soon. I strongly feel I owe it to myself and really Beth. She has seen me in bad shape long enough and would appreciate a strong man around the house. I have my supplements and herbs, a good vegan diet, and at least Avastin and antibiotics to fill the gap during a break. So its not like I will be leaving myself completely vulnerable to the cancer rebounding and taking over during the break. Also, I am accutely aware of where the cancer is in body and will be self monitoring those areas during the break. Any sign of trouble, I will be in touch with Dr. Chen and we will go from there. Maybe with some luck, I can get the PET scan approved during the break and we will have some good information going into the 3rd cycle.
On a final note, I have started the using the herbal drug Dr. Gignac prescribed to use through a nebulizer. He is pretty excited about this stuff and says it will be highly beneficial for lung cancer patients and for patients with other cancers that have metasticized to the lungs. The nurses told me he kept asking if I have been around this week to pick some up (it came in Monday). He is very interested in seeing how it will work for me so I guess that makes me the test subject. Early trials with the lab that makes it has shown good benefits. He made sure to see me while getting chemo to make sure I get it. In fact, he had Jess, the receptionist, put it out for me in case I didn't finish with chemo until after 5 PM and the clinic pharmacy was closed. I told me him I already got the nebulizer (Thank you Rachel, Beth's sister who picked it up at a discount rate!) and was ready to put it to use. I started this morning, a little strange, it will take some getting used too. I will use this twice a day for at least a month, probably longer. This medicine is prescription only and costs $120 for a month supply and of course, the insurance won't cover it. Maybe if and when it gets FDA approval, but then again, with the FDAs recent claims on medical marijuana, their stalling of Plan B emergency contraception pills for over the counter use even though the scientific panel approves it yet FDA appointed officials citing unscientific claims of increased promiscuous behavior, the hubbub over Vioxx safety, among other questionable issues and FDA behavior, I don't feel confident in their evalutions of drug safety and efficacy. In fact, I charge them with ideology and big pharma influencing their ability to evaluate what is and isn't good science. If I felt better to stand on my soapbox, I could write page after page of rants on just the FDA citing several articles I have been bookmarking over that last few months. However, ranting creates negative energy, something I don't want right now. But it does relieve built up tension so you might get it soon!
So I am now running behind to go get that chest xray so I don't have time to edit this blog entry. So I will just post it and you will have to work through the mistakes, I don't think you will mind...
Update: I got the results of the chest xray and it showed a possible increase in the fluid around the heart. Dr. Chen faxed the results to Dr. Sytman and I got an appointment for an ultrasound on the heart scheduled for Monday. I will probably have a follow up with Dr. Sytman to determine a course of action after that. It is possible that I may have to have it surgically drained which is pretty invasive requiring a hospital stay of 2-3 days. If so, hopefully it can be done well before the wedding. Dr. Chen is still mum on what do next week, I am scheduled for Thursday in case the decision is to resume chemo. If not, I will just get a vitamin infusion.
posted by Beth @ 4/28/2006 07:14:00 AM
1 Comments:
At 5/21/2006 9:27 AM,
Anonymous said…
James!
Get out of your 4 white wall apt and come out here to enjoy the nature. It's soooo revitalizing just hanging out here and listening to the birds and watching the cats play. Just come out whenever you want, not necessary to call ahead. If I come home and see you and Beth relaxing on the levee, having a picnic or whatever that'd make me very happy. Please come out anytime and revitalize yourself away from the hustle and bustle of the dirty city.
-Pam
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