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.
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