It just occurred to me that this day is almost over and I didn't let you all know that it is the anniversary of the day I was told I have cancer. I am now four years into this battle. Sometimes it feels like it has been forever then other times it feels like it is just sliding by one day melts into another and another and another. I wonder if that is because I sleep so much or maybe because it takes me so long to accomplish the simplest task. Maybe a lot of both. So, here is my lame attempt to apologize to all of the people that I owe e-mails to. I am just really overwhelmed with all of this right now and I don't get on the computer often enough to respond to anyone. However, I can assure you that I have read every single e-mail and I really do appreciate that you all care enough to keep writing and letting me know what is going on in your lives. Please do keep writing and calling too. I have been asked by quite a few of you when is a good time to call. My response is call whenever you want to. If I can't talk, I will tell you I can't. For those of you not already on Facebook, please join then friend me. I try to respond to people there. Two simple sentences is a lot easier for me to do than an entire e-mail. I also put a notice there whenever I update my webpages. So, you can read about the latest news much sooner than you will if I send out an e-mail notice. It would sure help me a lot.
Here is my health update: This coming week I will have my second round of the new chemotherapy I am on. It is called Temodar and comes in a pill form so I do not have to be infused, I just take one pill each day for 3-5 days. I am cautiously optimistic about this one. My back has been giving me a lot of problems this past week. So, besides not being able to walk and my problematic right arm I also have a painful back to add to the mix. I think my body hates me.
That is all I can think of right now.
Much love to everyone, Carole
Tuesday, April 20, 2010
Monday, March 22, 2010
Better Late Than Never?
I guess I never realized how hard it would be to write about all of this when the going gets really tough.
If I can just keep a sense of humor and have one good thing to report, I will do OK. Won't I? But then what if I don't? I never even thought about that. At least I can always have a good sense of humor to fall back on. Wrong again girlie. This is just so hard. Humor or not. I will try to find some to share here and keep the rest of it short as possible. From November to March in a nutshell...Like I could ever make anything short and sweet... LOL
When last I wrote we were abandoning the Gemcitabine treatments because my blood wouldn't recover quickly enough to get the important second infusion in the round. That left me with Avastin and Zometa infusions and meds for my pain. About this same time my pain was increasing at a rather alarming rate. My pain specialist kept upping the pain meds, but that would only work for a short time and we soon found ourselves looking at an enormous amount of pain relievers. Enough to kill most people, enough to cause plenty of unwelcome side effects in me. Finally, it was decided that the meds were no longer working and we set out to transition me to something new. This has been a long process that is still being fine tuned now. I am still not on top of the pain, but it could be a lot worse.
Back to the real (useful) treatments... Scans in January showed that three of the larger tumors in my hip were smaller than they had been on the previous scan. Now before you start getting all excited and start doing your happy dance, the difference in the small amount of shrinkage as compared to the growth in the larger tumors in my lungs is negligible. Plus there is the fact that there are now more than 20 tumors and an uncounted number of nodules in my lungs. I also have a spot on the back of my head that has been hurting (like a bruise) for 2 or 3 months and I am pretty certain there is something going on in my right knee. These things do not show up in any scans, so as far as my docs are concerned there is nothing there at all. The last time that happened, it kept getting worse and worse until I couldn't walk anymore. That ended with a rod in my right leg and a bunch of cancer cells being seeded into the incision area at my hip. After several rounds of radiation and several months of chemotherapy. Those seeded tumors are uncontrollable.
At some point along the way I became very unsteady walking with the cane, so I am back to the walker 100% of the time.
Currently, I had more scans on Monday to get a new baseline because we are switching me off Avastin and on to Temodar, a drug that is actually promising for LMS. It is in pill form, but is chemotherapy with all of the other attributes of chemo, like hair loss, blood count issues and feeling like you want to turn yourself inside out. I still have to do more research on the Temodar though. Find out all that I am up against. The insurance company has denied the prescription request, so I might have some time. The other alternative is Ifosfamide which requires 4 or 5 days per month in the hospital. Once the doctors office starts pre-authorization for that, we expect a quick approval for the Temodar. A few expensive pills is still less expensive that 4 or 5 hospital days per month. If they still don't approve the Temodar I guess I will be packing a bag.
The new scans show little change from those done in January. There are more tumors and they are bigger, as was expected. Now the stuff they were watching in my liver is also more distinct. Hopefully these new chemotherapy agents will slow things down some. The radiologists are now saying that the lack of healing in the area around my prosthesis might actually be from an infection or tumor growth around my knee.
That is about it. Except..... I need help! I need someone that can come into my home to cut my hair. I can't get into the big barber chair anymore and cutting my own hair is not working so well. I need so much help around the house it is mind boggling. Poor Scott the (un) saint that he is, tries so hard to do everything, but the everything keeps growing in volume and it all ends up getting put on the back burner. I just need help.
I am not ready to give up, but this is just so hard to write about. I have always felt as though having something interesting to write about requires having some good news to report. Everyone wants some encouraging news to read so that they can offer encouragement back. I wish there was something good to report.
Here is the humor, thanks to Mimi & Phil. http://e-CJ.home.comcast.net/xH/Aging/TwoGrannies.htm click the link and it will take you to my favorite forwards. It is an image of about 47 kb for those of you with slow internet connections.
If I can just keep a sense of humor and have one good thing to report, I will do OK. Won't I? But then what if I don't? I never even thought about that. At least I can always have a good sense of humor to fall back on. Wrong again girlie. This is just so hard. Humor or not. I will try to find some to share here and keep the rest of it short as possible. From November to March in a nutshell...Like I could ever make anything short and sweet... LOL
When last I wrote we were abandoning the Gemcitabine treatments because my blood wouldn't recover quickly enough to get the important second infusion in the round. That left me with Avastin and Zometa infusions and meds for my pain. About this same time my pain was increasing at a rather alarming rate. My pain specialist kept upping the pain meds, but that would only work for a short time and we soon found ourselves looking at an enormous amount of pain relievers. Enough to kill most people, enough to cause plenty of unwelcome side effects in me. Finally, it was decided that the meds were no longer working and we set out to transition me to something new. This has been a long process that is still being fine tuned now. I am still not on top of the pain, but it could be a lot worse.
Back to the real (useful) treatments... Scans in January showed that three of the larger tumors in my hip were smaller than they had been on the previous scan. Now before you start getting all excited and start doing your happy dance, the difference in the small amount of shrinkage as compared to the growth in the larger tumors in my lungs is negligible. Plus there is the fact that there are now more than 20 tumors and an uncounted number of nodules in my lungs. I also have a spot on the back of my head that has been hurting (like a bruise) for 2 or 3 months and I am pretty certain there is something going on in my right knee. These things do not show up in any scans, so as far as my docs are concerned there is nothing there at all. The last time that happened, it kept getting worse and worse until I couldn't walk anymore. That ended with a rod in my right leg and a bunch of cancer cells being seeded into the incision area at my hip. After several rounds of radiation and several months of chemotherapy. Those seeded tumors are uncontrollable.
At some point along the way I became very unsteady walking with the cane, so I am back to the walker 100% of the time.
Currently, I had more scans on Monday to get a new baseline because we are switching me off Avastin and on to Temodar, a drug that is actually promising for LMS. It is in pill form, but is chemotherapy with all of the other attributes of chemo, like hair loss, blood count issues and feeling like you want to turn yourself inside out. I still have to do more research on the Temodar though. Find out all that I am up against. The insurance company has denied the prescription request, so I might have some time. The other alternative is Ifosfamide which requires 4 or 5 days per month in the hospital. Once the doctors office starts pre-authorization for that, we expect a quick approval for the Temodar. A few expensive pills is still less expensive that 4 or 5 hospital days per month. If they still don't approve the Temodar I guess I will be packing a bag.
The new scans show little change from those done in January. There are more tumors and they are bigger, as was expected. Now the stuff they were watching in my liver is also more distinct. Hopefully these new chemotherapy agents will slow things down some. The radiologists are now saying that the lack of healing in the area around my prosthesis might actually be from an infection or tumor growth around my knee.
That is about it. Except..... I need help! I need someone that can come into my home to cut my hair. I can't get into the big barber chair anymore and cutting my own hair is not working so well. I need so much help around the house it is mind boggling. Poor Scott the (un) saint that he is, tries so hard to do everything, but the everything keeps growing in volume and it all ends up getting put on the back burner. I just need help.
I am not ready to give up, but this is just so hard to write about. I have always felt as though having something interesting to write about requires having some good news to report. Everyone wants some encouraging news to read so that they can offer encouragement back. I wish there was something good to report.
Here is the humor, thanks to Mimi & Phil. http://e-CJ.home.comcast.net/xH/Aging/TwoGrannies.htm click the link and it will take you to my favorite forwards. It is an image of about 47 kb for those of you with slow internet connections.
Saturday, November 28, 2009
Happy Saturday After Thanksgiving
Scott and I just returned Tuesday from a wonderful week in Maui. Though I really do not care much for warmer weather I have to admit that the warmth of the Hawaiian sun resulted in reduced pain levels and a temporary reduction in pain meds. I was not really aware of how much until the wave of pain that I didn't miss at all returned. In Maui we met quite a few people from this area who are now residents. They say Maui calls to you. Scott and I would never come back except for a few things, SCCA, my mother, our daughter and his need to go into the office once in a while. Not necessarily in that order. It makes moving to LA, where I can get better sarcoma care, look a lot more attractive too.
An interesting thing happened while we were gone. Very few people knew about this trip because of our interest in internet security issues. A culprit, who shall remain nameless, admitted to mentioning our whereabouts on the internet. An event that was undone quickly, once the potential security leak was pointed out. Upon arriving home our neighbor mentioned that he had seen a U-Haul truck sitting in front of our house one day. He did some investigating, making it obvious to the occupants that he was watching them and kept a close eye on them until they finally left. Perhaps they had some legitimate business sitting in front of our house and these two incidents are not related at all, but they sure made us think hard. First, about how thankful we are to have such an observant neighbor who used to be a officer of the law. Second, about how important it is to be aware of internet security for everyone who uses the internet. Even us old fogeys who do not have the same kind of security issues that teens and pre-teens have on the internet.
BTW, our house was not broken into. Everything was safe inside when we got home. So, the moral to this story is probably something like this: Do not advertise it on the internet when you are going out of town for a while and if you know someone else that is going out of town it is also a good idea to keep that to yourself. You can never be too careful about your own security OR that of others you care about.
Coming up this week. More chemo. They have dropped the gemcitabine since it is suspected that is the cause of my blood count issues. Next week I have an MRI and appointment ordered by and with the head of the sarcoma program at SCCA. They called our second day in Hawaii and woke us up so we did not get much of a chance to ask why they have asked for this appointment, but considering the less than stellar test results we have had of late we think it must be for a very good reason.
An interesting thing happened while we were gone. Very few people knew about this trip because of our interest in internet security issues. A culprit, who shall remain nameless, admitted to mentioning our whereabouts on the internet. An event that was undone quickly, once the potential security leak was pointed out. Upon arriving home our neighbor mentioned that he had seen a U-Haul truck sitting in front of our house one day. He did some investigating, making it obvious to the occupants that he was watching them and kept a close eye on them until they finally left. Perhaps they had some legitimate business sitting in front of our house and these two incidents are not related at all, but they sure made us think hard. First, about how thankful we are to have such an observant neighbor who used to be a officer of the law. Second, about how important it is to be aware of internet security for everyone who uses the internet. Even us old fogeys who do not have the same kind of security issues that teens and pre-teens have on the internet.
BTW, our house was not broken into. Everything was safe inside when we got home. So, the moral to this story is probably something like this: Do not advertise it on the internet when you are going out of town for a while and if you know someone else that is going out of town it is also a good idea to keep that to yourself. You can never be too careful about your own security OR that of others you care about.
******************************
Coming up this week. More chemo. They have dropped the gemcitabine since it is suspected that is the cause of my blood count issues. Next week I have an MRI and appointment ordered by and with the head of the sarcoma program at SCCA. They called our second day in Hawaii and woke us up so we did not get much of a chance to ask why they have asked for this appointment, but considering the less than stellar test results we have had of late we think it must be for a very good reason.
Wednesday, November 11, 2009
Clueless
Bad News, we got some scan results yesterday from the Friday CT and found out that the pain in my hip is probably increasing because the tumors are growing and there are more and larger tumors in my lungs as well. That is a partial report that Pam (my pain specialist) read to me because I do not have an appointment to see the doc to discuss it. I am still waiting to see what the doc's office has to say about it. My thoughts are that the recent radiation didn't help a lot, if at all, maybe they knocked the growth back some, but not enough to outpace growth. This is actually news we sort of expected because of the way my body reacted when I had radiation.
Good News, it looks like my liver is still clean. Same for kidneys. Despite the gravity of the situation I am still in pretty good spirits. No point in tears and sadness, right?
Just News, I was unable to have chemo again on Monday. Platelets were too low. I gave myself three Neupogen shots so my white blood cells would not prevent that from happening again.
I have no idea what do to next or where to go from here. Is there something out there in the universe telling me that Gemzar or Avastin are not right for me?
Good News, it looks like my liver is still clean. Same for kidneys. Despite the gravity of the situation I am still in pretty good spirits. No point in tears and sadness, right?
Just News, I was unable to have chemo again on Monday. Platelets were too low. I gave myself three Neupogen shots so my white blood cells would not prevent that from happening again.
I have no idea what do to next or where to go from here. Is there something out there in the universe telling me that Gemzar or Avastin are not right for me?
Monday, November 2, 2009
Yay, it's a new day!
I got my new Power Port today (Monday). Do not know why I did not do this sooner... It was not so bad and truly wonderful when it comes time to draw blood or get chemo.
Chemo went OK too, but tomorow and the next few days might be telling another story. Stay tuned...
Chemo went OK too, but tomorow and the next few days might be telling another story. Stay tuned...
Sometimes I feel like I have bitten off more than I can chew...
...and this is definitely one of those times! I owe everyone I know an update and yet I simply can't find the time to individually contact every one / each group. So, this will have to do. I hope you all, or at least those who see this, understand. I have just been feeling like there are not enough hours in a day a lot lately.
Tomorrow (Monday) is chemo. It had been delayed from last Monday which was the original date. The reason it did not happen then is because we just decided that I could not have any more chemotherapy without a port. The last time they poked my arm so many times that I looked like I'd been through a war zone for the following month. So now they won't be able to do that again. I am not very excited about this at all, but the time has come. My schedule is two weeks of chemo, then two weeks off. That is one round, then after that the next round begins with two weeks on and two weeks off and they will follow that schedule for future rounds as long as the white blood counts do not tank again.
Next week, I will also have some scans that are way overdue. We need to see how things look in there and if there is any sign that all the radiation I had over the last few months might have been successful. I am not holding out a lot of hope because I have not really seen any signs of improvement.
The party for my mother's 80 birthday was really a blast though. As much as it is mostly why I have been so out of touch, I am very glad that I devoted so much of my time to planning it. There were 63 people there, including her two brothers who came from Idaho and Utah to be with her. To be able to give a gift like that to my mother is..... well... priceless.
Now, I wish there was something so wonderful that I could do for Scott to let him know how much I love and appreciate him and how much I always will...
Tomorrow (Monday) is chemo. It had been delayed from last Monday which was the original date. The reason it did not happen then is because we just decided that I could not have any more chemotherapy without a port. The last time they poked my arm so many times that I looked like I'd been through a war zone for the following month. So now they won't be able to do that again. I am not very excited about this at all, but the time has come. My schedule is two weeks of chemo, then two weeks off. That is one round, then after that the next round begins with two weeks on and two weeks off and they will follow that schedule for future rounds as long as the white blood counts do not tank again.
Next week, I will also have some scans that are way overdue. We need to see how things look in there and if there is any sign that all the radiation I had over the last few months might have been successful. I am not holding out a lot of hope because I have not really seen any signs of improvement.
The party for my mother's 80 birthday was really a blast though. As much as it is mostly why I have been so out of touch, I am very glad that I devoted so much of my time to planning it. There were 63 people there, including her two brothers who came from Idaho and Utah to be with her. To be able to give a gift like that to my mother is..... well... priceless.
Now, I wish there was something so wonderful that I could do for Scott to let him know how much I love and appreciate him and how much I always will...
Sunday, October 11, 2009
Sunday Night
I said I'd update this every day or every other day, didn't I? I just don't think my life is that interesting. Especially now as I feel like I am just circling the drain. It has been one week (tomorrow) since my last radiation treatment and I am not feeling any better, but then again I am also not feeling that much worse. Kind of a position of limbo or something like that. Maybe the radiation is knocking it back just enough to give me a few more days, pain or no pain... well... since there is no such thing as no pain, just a few more days to appreciate life and wish it would just go away. I am still thankful for each day, however, my life is kind of boring. Maybe it is just that dying from cancer is really boring.
Dr Kelly wanted to see me on Tuesday, but her schedulers didn't bother to consult with me about my own availability and just sent me a notice. Sadly, I have both a dental appointment and physical therapy at the same time. So, I called and asked to reschedule for a time that I am actually available. They said they would have somebody call me to reschedule. The next day I get another notice in the mail with another appointment to see Dr Kelly, in one month. What is it they don't understand about please call me and set an appointment with me in person?
Little frustrations like this have been bothering me a lot lately.
I missed a wedding I really wanted to go to yesterday. It was in California and the trip just would have been too long for me.
Mom's 80th birthday party is in just under two weeks now, on the 24th. The plans are coming along for that quite nicely and it looks like we will have over 50 people there too. What a great thing that will be for her. All of us really. I need a party and to see some of the people that will be there like my sister Nancy. I am so looking forward to that.
Then I will begin chemotherapy again on the 26th.
So, that is just about all that is going on in my life, except I am working on a senior portrait. That really is a lot of fun! It is one that I donated to an auction back in 2007. Wonderful mom and delightful daughter. I might post some of the session images at dA. http://e-cj.deviantart.com later this week if I run out of other things to do.
Does anyone read this blog? Please let me know if you do and I will be sure to keep writing when I can. The lack of responses to most of my posts tells me that maybe my time might best be used elsewhere. So, let me know if these posts make a difference to you.
Have a great day!
Smiles, CJ
Dr Kelly wanted to see me on Tuesday, but her schedulers didn't bother to consult with me about my own availability and just sent me a notice. Sadly, I have both a dental appointment and physical therapy at the same time. So, I called and asked to reschedule for a time that I am actually available. They said they would have somebody call me to reschedule. The next day I get another notice in the mail with another appointment to see Dr Kelly, in one month. What is it they don't understand about please call me and set an appointment with me in person?
Little frustrations like this have been bothering me a lot lately.
I missed a wedding I really wanted to go to yesterday. It was in California and the trip just would have been too long for me.
Mom's 80th birthday party is in just under two weeks now, on the 24th. The plans are coming along for that quite nicely and it looks like we will have over 50 people there too. What a great thing that will be for her. All of us really. I need a party and to see some of the people that will be there like my sister Nancy. I am so looking forward to that.
Then I will begin chemotherapy again on the 26th.
So, that is just about all that is going on in my life, except I am working on a senior portrait. That really is a lot of fun! It is one that I donated to an auction back in 2007. Wonderful mom and delightful daughter. I might post some of the session images at dA. http://e-cj.deviantart.com later this week if I run out of other things to do.
Does anyone read this blog? Please let me know if you do and I will be sure to keep writing when I can. The lack of responses to most of my posts tells me that maybe my time might best be used elsewhere. So, let me know if these posts make a difference to you.
Have a great day!
Smiles, CJ
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