Well, the Xeloda seems to be helping. I've noticed improvement in my left hand as far as having sensation and less of the waking in the middle of the night with shooting pains. So, I'm optimistic that it's helping. The back pain has not improved much at all but I'm just starting round two of this chemo so it's early yet.
I lost my mind and got a puppy. His name is Opus. Yes, largely named after the wonderful and expensive wine Opus One. He's Opus Two;) He's lovely and follows me around EVERYWHERE. It's fairly insane to have adopted him only 4 days after putting our old dog, Daphne, to sleep. My friends generally think I'm crazy but a few understand. I just needed to think about something other than cancer, feeling sick, and (gasp) death. Not that I'm anywhere near that but stage IV cancer brings the grim reaper to your mind more than most would like. Opus is a wonderful diversion from all of that horrible mess and is absolutely adorable. Opus Two looks like the puppy in the Cottonelle commercials. Love him! So, I'm now exhausted, sleep deprived and busier than ever. But I'm also loved unconditionally by this fairly portable and super cuddly walking companion. Heaven!
The urgency to adopting him was that the Robeson County Animal Shelter is a high-kill shelter. They have TONS of puppies needing to be adopted and apparently they euthanize them shortly after receipt. VERY sad place, even for the desensitized. So, if anyone needs a new pet, check it out but bring your tissues. It's in St. Pauls about 80 miles from Wilmington.
Blessings and love and puppy kisses to all!
Thursday, January 21, 2010
Thursday, January 7, 2010
Latest developments
I just realized today how long it's been since I've posted. Sorry!
Yesterday, Geoff and I met with my new oncologist at UNC Chapel Hill -- Dr. Muss. He was highly recommended by Dr. Winer and they are friends as well. So they can and will consult on my treatment. Which is good because my health situation is declining.
Despite all of my fun travels in December, my cancer has progressed. It's now in almost every vertebrae in my back including a a new spot -- all over the cervical spine. This explains the stiffness in my neck and may explain my increasingly numb left hand. In the middle of the night, I wake up with shooting pains in that hand. Last night, I was almost in tears it hurt so bad. I could not get the pain under control unless I slept with my hand hanging off the side of the bed! Weird. Doc does not know if that's caused by a cyst they found near my spine or if it's another central nervous system issue. In any event, it's scary. Getting tough to use my left hand sometimes and I DON'T like that.
Probably even more troubling, my back pain has gone through the roof lately. That's in the lower back where I received radiation a few short months ago. So glad I did that treatment for nothing. Based on my pain level, Dr. Muss believes that the cancer is progressing in my body (which is confirmed by the scans). I just feel poisoned inside. Yuck!
So, I'll be starting chemo in the next few weeks. Hopefully, I'll be doing Xeloda which is a pill chemo. Although I won't lose my hair, it has some nasty GI side effects and would be on a long term basis, or at least one year. As Dr. Muss said a few times yesterday, they can't cure me now. (tough to hear). And it's not just about giving me the longest life possible, they also want to consider quality of life. Of course, we were reminded that it's not a good sign that there was such a short time between my original diagnosis and my mets diagnosis (less than 2 years). Again, hard to hear.
Well, we're trying to stay positive. None of this news was surprising or anything. Sometimes, though, it's still a surprise. Sorry I don't have any great positive spin to put on all of this. Just maybe that we all need to count our blessings, appreciate our loved ones, and not stress about how much silly money we all just spent on the holidays. God bless.
Yesterday, Geoff and I met with my new oncologist at UNC Chapel Hill -- Dr. Muss. He was highly recommended by Dr. Winer and they are friends as well. So they can and will consult on my treatment. Which is good because my health situation is declining.
Despite all of my fun travels in December, my cancer has progressed. It's now in almost every vertebrae in my back including a a new spot -- all over the cervical spine. This explains the stiffness in my neck and may explain my increasingly numb left hand. In the middle of the night, I wake up with shooting pains in that hand. Last night, I was almost in tears it hurt so bad. I could not get the pain under control unless I slept with my hand hanging off the side of the bed! Weird. Doc does not know if that's caused by a cyst they found near my spine or if it's another central nervous system issue. In any event, it's scary. Getting tough to use my left hand sometimes and I DON'T like that.
Probably even more troubling, my back pain has gone through the roof lately. That's in the lower back where I received radiation a few short months ago. So glad I did that treatment for nothing. Based on my pain level, Dr. Muss believes that the cancer is progressing in my body (which is confirmed by the scans). I just feel poisoned inside. Yuck!
So, I'll be starting chemo in the next few weeks. Hopefully, I'll be doing Xeloda which is a pill chemo. Although I won't lose my hair, it has some nasty GI side effects and would be on a long term basis, or at least one year. As Dr. Muss said a few times yesterday, they can't cure me now. (tough to hear). And it's not just about giving me the longest life possible, they also want to consider quality of life. Of course, we were reminded that it's not a good sign that there was such a short time between my original diagnosis and my mets diagnosis (less than 2 years). Again, hard to hear.
Well, we're trying to stay positive. None of this news was surprising or anything. Sometimes, though, it's still a surprise. Sorry I don't have any great positive spin to put on all of this. Just maybe that we all need to count our blessings, appreciate our loved ones, and not stress about how much silly money we all just spent on the holidays. God bless.
Monday, December 7, 2009
Goodbye 2009
So, I've not updated in a while. I've been trying to convince myself that I can block my health problems out of my mind. And I can, if only for a while. We went on our family trip to Europe 2 weeks ago, and no one but my family knew my situation. So, except for brief discussions with Geoff, I NEVER talked about my health, doctor appointments, or anything. And I managed to keep up with the long walking tours we went on in France and Italy and held up better than most of the other American tourists. (Not that that is saying anything given the state of our country's health). Thank you Concerta (ADHD med used for energy in my case) for giving me the energy to do so.
I went back to Boston last week. After much thought and discussion, I've decided to see a medical oncologist in Chapel Hill and Dr. Winer gave me the name of a good doctor to see in CH. I WILL eventually have to do chemo and WILL eventually, more than likely, be hospitalized. It just made sense to have a med onc that was closer than 900 miles away for when that happens. I also decided I'd rather spend my travel $ on fun trips to, I don't know, Europe, than on doctor appointments.
The next blip on the radar is getting an MRI of my cervical spine. Apparently, my persistent headaches are not due to brain mets (Thank God!) However, I have lost most feeling in 2 fingertips on my left hand (not side where lymph nodes removed) that may or may not be due to a new tumor pushing on a nerve in my cervical spine. At this point, they've only (!) found tumors in my thoracic and lumbar spine. It's a little alarming, because at some times I can barely feel 2 fingers in my left hand. But I told Dr. Winer I don't want to do anything before the new year. Got to enjoy the holidays as best I can!
Well, off to get some work done. I've not worked much lately. I have another trip this week. This time, to the wine country and SF Bay area! Happy holidays one and all!
I went back to Boston last week. After much thought and discussion, I've decided to see a medical oncologist in Chapel Hill and Dr. Winer gave me the name of a good doctor to see in CH. I WILL eventually have to do chemo and WILL eventually, more than likely, be hospitalized. It just made sense to have a med onc that was closer than 900 miles away for when that happens. I also decided I'd rather spend my travel $ on fun trips to, I don't know, Europe, than on doctor appointments.
The next blip on the radar is getting an MRI of my cervical spine. Apparently, my persistent headaches are not due to brain mets (Thank God!) However, I have lost most feeling in 2 fingertips on my left hand (not side where lymph nodes removed) that may or may not be due to a new tumor pushing on a nerve in my cervical spine. At this point, they've only (!) found tumors in my thoracic and lumbar spine. It's a little alarming, because at some times I can barely feel 2 fingers in my left hand. But I told Dr. Winer I don't want to do anything before the new year. Got to enjoy the holidays as best I can!
Well, off to get some work done. I've not worked much lately. I have another trip this week. This time, to the wine country and SF Bay area! Happy holidays one and all!
Saturday, October 17, 2009
My October trip to Boston
Well I made it back safely from the Philadelphia Airport. Barely. I will make a note to myself to not fly through that vortex again.
I saw my doctor on Thursday after having a full-body CT scan. They even did my head this time to check on my headaches that have been bothering me lately and to rule out brain mets. The scans did not show anything in my brain and some of the areas in my bones showed some improvement. So they believe that the Femara is working. While I am of course happy about that news, I have a high degree of skepticism when it comes to the scans because they have been wrong before. After all, it took over a year for them to find the bone mets that I knew were there all along. Unfortunately, I believe in listening to my body first and listening to the doctor second. I am thrilled, however, that I do not have to have any chemo right now. The doctor said we'd be doing that at some point but it can wait. Given my current level of overall fatigue and these headaches I don't want any treatment beyond the Femara for a while. I'm so excited to go to San Fran and the wine country in December too that I want to be up for that. Cancer be damned.
Luckily, I did not get as sick from the Zometa treatment this time. Which is good since it took me 29 hours to fly home from Boston!! That's a blog post in and of itself. For another time. Doc wants to see me in 7 weeks. I'm thinking of putting that off until January. For some reason, I want to focus on friends and family for the next 3 months. Again, cancer can s*** it. I nearly had a panic attack before this last doctor appointment, waiting for the scan results. Although he doesn't want to do any scans at the next appointment, I think I just need a mental vacation from all this crap for a while. The holidays take a lot of energy and I want to REALLY try and enjoy it this year instead of just surviving it, if that makes any sense.
Thanks for listening. Sorry I'm not a short poster! Hope all my friends and family are doing well!
One more thing. I'm going to start telling people most of the time that while I appreciate their questions about how I am doing I don't want to talk about it. At all. Please don't take offense at that. But every time I have to talk about it, I have to relive it. And if I'm ever able to put all this out of my mind, that's a good thing. Thanks for understanding! xoxo
I saw my doctor on Thursday after having a full-body CT scan. They even did my head this time to check on my headaches that have been bothering me lately and to rule out brain mets. The scans did not show anything in my brain and some of the areas in my bones showed some improvement. So they believe that the Femara is working. While I am of course happy about that news, I have a high degree of skepticism when it comes to the scans because they have been wrong before. After all, it took over a year for them to find the bone mets that I knew were there all along. Unfortunately, I believe in listening to my body first and listening to the doctor second. I am thrilled, however, that I do not have to have any chemo right now. The doctor said we'd be doing that at some point but it can wait. Given my current level of overall fatigue and these headaches I don't want any treatment beyond the Femara for a while. I'm so excited to go to San Fran and the wine country in December too that I want to be up for that. Cancer be damned.
Luckily, I did not get as sick from the Zometa treatment this time. Which is good since it took me 29 hours to fly home from Boston!! That's a blog post in and of itself. For another time. Doc wants to see me in 7 weeks. I'm thinking of putting that off until January. For some reason, I want to focus on friends and family for the next 3 months. Again, cancer can s*** it. I nearly had a panic attack before this last doctor appointment, waiting for the scan results. Although he doesn't want to do any scans at the next appointment, I think I just need a mental vacation from all this crap for a while. The holidays take a lot of energy and I want to REALLY try and enjoy it this year instead of just surviving it, if that makes any sense.
Thanks for listening. Sorry I'm not a short poster! Hope all my friends and family are doing well!
One more thing. I'm going to start telling people most of the time that while I appreciate their questions about how I am doing I don't want to talk about it. At all. Please don't take offense at that. But every time I have to talk about it, I have to relive it. And if I'm ever able to put all this out of my mind, that's a good thing. Thanks for understanding! xoxo
Tuesday, September 29, 2009
The Truck that is Radiaton
Ok, I've only got 2 radiation treatments left:) Which is good, because I generally feel like I've been hit, repeatedly, by an enormous truck that has driven over me over and over again and then left me in the road only to be hit by a steamroller. AGGHHH!!!!!! I should bounce back within the next few weeks though. I go back to Boston on October 14 and see the doc on the 15th. Hopefully I won't cry in his office this time. This time, I'm bringing reinforcements. (thanks, Juhu!) I will not see the doc alone again, especially when I'm going to probably get scans again and those are always interesting, to say the least.
I guess I'm looking at chemo as the next fun treatment regimen. Hmmm. Can't wait for that. I'm not going to let that interfere with my planned trip to the wine country in December. I've not even had the energy to drink wine lately, which on my "sick o'meter" means I'm feeling pretty bad! I'll have to get over that in time to drink some stellar cabernet. Life's too short to miss out on the good wines at Joseph Phelps, etc. Maybe I get to keep my hair this time. That would be nice.
So I don't really have any wise words for everybody right now. I'll post again when I get back from Boston and recover from the Zometa and whatever else they throw at me. Halloween's just around the corner and it's almost time to decorate. It's still my favorite holiday! Makes me think of those years in San Fran when we used to go see all the thousands of people dressed up in the Castro district. Good times!
I guess I'm looking at chemo as the next fun treatment regimen. Hmmm. Can't wait for that. I'm not going to let that interfere with my planned trip to the wine country in December. I've not even had the energy to drink wine lately, which on my "sick o'meter" means I'm feeling pretty bad! I'll have to get over that in time to drink some stellar cabernet. Life's too short to miss out on the good wines at Joseph Phelps, etc. Maybe I get to keep my hair this time. That would be nice.
So I don't really have any wise words for everybody right now. I'll post again when I get back from Boston and recover from the Zometa and whatever else they throw at me. Halloween's just around the corner and it's almost time to decorate. It's still my favorite holiday! Makes me think of those years in San Fran when we used to go see all the thousands of people dressed up in the Castro district. Good times!
Wednesday, September 9, 2009
My Thoughts on Radiation
Radiation sucks. That's the best way to describe it. No offense to Dr. Maguire for the way they've lined up these toxic beams to hit my body but it still sucks. Apparently there's no way to radiate my lower back without hitting part of my bowels which causes nausea and stomach pain. So, I can add Zofran to my repertoire of pills which are so numerous I need an old lady's pill box with am/pm dividers to keep track of it all. Who'd have thought! Anyway, it's supposed to help. Considering that I woke up with stabbing pains on my right shoulder blade yesterday which is an area they can't radiate, incidentally, because it's in the field that was already radiated last year, I'm not all that optimistic that the radiation treatment is doing anything except keeping my L3 vertebrae from fracturing, which, admittedly, is a biggie. I can hardly wait to experience the fatigue that is already bad but will worsen with more treatments. Yippee!
So, the folks up in Boston are once again concerned that the pain has increased and spread. Means that the hormonal treatments are likely not working. Probably also means chemo is on the horizon when I meet with them in October. Maybe I can keep my hair this time. Woo hoo! On a more positive note....
Last night our small church group talked about the meaning of love and how we should put the needs of others, everyone, before our own. Wow, that's hard. I've always thought I got the pass on that one since it takes every ounce of energy I have to take care of myself and my children right now. But I don't think so anymore. I've found when I actually step outside my little world with its accompanying health problems and fears that even I can help other people. Maybe it's just calling to check up on a friend who's having a difficult time. Perhaps I need to let some other driver merge while I'm sitting in a traffic jam. Maybe I just need to let my overworked, stressed out husband know that I appreciate how hard he works to make a living for all of us. I don't know. We can all do something for another person. Give it a try. You might find that your expressed concern and time makes YOU feel better as well as that other person.
Have a great day one and all!
So, the folks up in Boston are once again concerned that the pain has increased and spread. Means that the hormonal treatments are likely not working. Probably also means chemo is on the horizon when I meet with them in October. Maybe I can keep my hair this time. Woo hoo! On a more positive note....
Last night our small church group talked about the meaning of love and how we should put the needs of others, everyone, before our own. Wow, that's hard. I've always thought I got the pass on that one since it takes every ounce of energy I have to take care of myself and my children right now. But I don't think so anymore. I've found when I actually step outside my little world with its accompanying health problems and fears that even I can help other people. Maybe it's just calling to check up on a friend who's having a difficult time. Perhaps I need to let some other driver merge while I'm sitting in a traffic jam. Maybe I just need to let my overworked, stressed out husband know that I appreciate how hard he works to make a living for all of us. I don't know. We can all do something for another person. Give it a try. You might find that your expressed concern and time makes YOU feel better as well as that other person.
Have a great day one and all!
Tuesday, September 1, 2009
I think to myself.... what a wonderful world
So yesterday I got to look at the actual report of my scans from last week. The bone scan showed metastases all over my spine from areas in the cervical and thoracic spine and throughout the lumbar spine. The report says the L3 vertebrae is at risk for "pathological compression fracture." Hmmm. I'm guessing that, if it fractured, I'd be looking at not being able to walk or something. Not a good option. Anyway, I had a radiation planning session yesterday, a simulation tomorrow, and should start treatment on the lumbo-sacral region this week. They're not going to radiate all the areas where there's cancer because they can't. That means the cancer will remain in other problem areas, particularly the thoracic spine. But I can do that later. The main thing is preventing the scary possibility of fracture of the L3 and compression on the spinal fluid with all the other problems that could bring. My imagination does not even want to consider that too much....
Geoff is nervous, my friends are nervous about this latest turn of events. I was alarmed by reading the report simply because my last scan in may only named a few possible places of bone mets. This report named so many in my spine, ribs, hips and pelvis areas that I can't even remember them. Strangely, however, I've got such a sense of peace about all of this. I want healing and pray for it every day. I believe, however, that ultimately this is all in God's hands. And I've received a chance in my current (admittedly doped up on painkillers) state to REALLY look around at what is so precious in my life. I've got a fantastic group of friends that are always there for me and who truly round out my life in a way I did not have before all this crap started 2 years ago. I've been able to see who is really important to me. And my kids are incredible. I cuddled with them last night and, instead of thinking about all the things I needed to be doing at that moment, I could actually appreciate the depth of my love for them and their love for me. And of course, my husband and soul mate. We've always been able to communicate well, enjoy each others company, and to live together peacefully. But now, the rest of the riff/raff of life can be shaken away and we understand how important it is just to be together. Even on a normal Tuesday evening. THIS is what really matters. Not my health and not cancer; not money and big houses; not travel and fine dining; not even work.
I'm not hormonal now (I don't think I can be). But I think to myself.... what a wonderful world. Go look at the flowers today. Notice the stars in the sky tonight. Kiss your loved ones. Things can change in an instant. Carpe diem.
Geoff is nervous, my friends are nervous about this latest turn of events. I was alarmed by reading the report simply because my last scan in may only named a few possible places of bone mets. This report named so many in my spine, ribs, hips and pelvis areas that I can't even remember them. Strangely, however, I've got such a sense of peace about all of this. I want healing and pray for it every day. I believe, however, that ultimately this is all in God's hands. And I've received a chance in my current (admittedly doped up on painkillers) state to REALLY look around at what is so precious in my life. I've got a fantastic group of friends that are always there for me and who truly round out my life in a way I did not have before all this crap started 2 years ago. I've been able to see who is really important to me. And my kids are incredible. I cuddled with them last night and, instead of thinking about all the things I needed to be doing at that moment, I could actually appreciate the depth of my love for them and their love for me. And of course, my husband and soul mate. We've always been able to communicate well, enjoy each others company, and to live together peacefully. But now, the rest of the riff/raff of life can be shaken away and we understand how important it is just to be together. Even on a normal Tuesday evening. THIS is what really matters. Not my health and not cancer; not money and big houses; not travel and fine dining; not even work.
I'm not hormonal now (I don't think I can be). But I think to myself.... what a wonderful world. Go look at the flowers today. Notice the stars in the sky tonight. Kiss your loved ones. Things can change in an instant. Carpe diem.
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