Hi all. No real news to report, except apparently I am shrinking. Several years ago, when my mom passed away from an abdominal aneurysm it became important to me to start preserving my health so that when I was in my 70s I would still be active and in good health. My mom's health had deteriorated due to a lifetime of smoking and subsequent heart issues and emphysema. Couple that with small veins due to her petite size and the surgical procedures available to treat her aneurysm weren't an option for her. That broke my heart but also galvanized me to not land in the same boat. So I joined a gym along with Bruce and started working out. I cut down soda to one a day as my '06 New Year's resolution and started drinking more water. Those two things alone and I lost a clothing size within a few months. Very cool.
Jump ahead to 2008, when cancer made it's first appearance in my life. Once I was done with treatment, I made more lifestyle changes related to preventing the cancer from coming back. I ate only whole grains (well mostly), increased my fruits and veggies to 7-10 servings a day, avoided processed food, and took up running. Lo and behold another clothing size melted away and stayed away. Very very cool.
So now here we are in 2012, with cancer showing it's face again, and I've lost another 10-12 pounds. The extra "baby-15" I've been toting around is finally gone! And it seems to be staying off. Which is good since my "babies" are 17 and 21! Some of it was surgically removed so I have to acknowledge that, but I didn't have much going on there to begin with so it couldn't have been more than 2-3 pounds. But now, by doing the same as above with a renewed fervor AND eliminating most sugar from my diet (no candy, cakes, brownies, cookies, etc) I am weighing in at 126 or so, which I don't think I've weighed that since middle school! I am buying shorts in a size 4 as my current shorts wardrobe is mostly too big. I have never been a size 4...think I skipped right over that from being a "Lemon Frog" (ha ha does anyone remember that??) in middle school to a size 9/11 in high school. Granted they have adjusted the sizes over the years so what was a size 11 is more like a 9 now and so on.....but still.....I am shrinking!
Over the last few years, I think I have lost just under 25 pounds which is pretty cool. Except now health care workers comment on how "little" I am. In the hospital, the nurse decided my gown was too big and went and got me a child's gown! Which, I must admit, mostly fit except I couldn't close it in the back! Yesterday, the massage therapist commented "You are so little on the table." I know these are compliments, it's just weird being told you are little when you don't feel little! While I am very happy with the weight loss, I don't really want to lose anymore, and I'd be happy to settle in at 125-130 which would be a very healthy weight for my height. It's also not a diet I'd recommend: the death of a parent/cancer/chemo/cancer again/chemo again/surgery/radiation/no sugar diet. Don't really see a book deal or an appearance on Dr. Oz coming out of that one!
PS...does anyone have a cookie? Oh dang...that's right...no cookies for me, for now at least ;)
Friday, June 29, 2012
Tuesday, June 12, 2012
Crazy but good news...I think?
I've been in radiation for a a little more than a week now and it's going well. The spot on my spine will be done on Friday, then just 6 more weeks for the chest area. I go every day, but on Mondays I get to see the doctor. So yesterday I thought I would ask him about my liver since we've got this phase of treatment off and running. When I asked him, first he said, "Well I don't think those little spheres are going to work for you" meaning the one option with the radioactive beads and so I asked him why. He said he showed my scan to the liver cancer specialist (although it's not technically liver cancer, it's breast cancer in my liver) and he said there was really nothing to treat. What? Slam on the brakes here a minute mister....NOTHING TO TREAT????? My look of astonishment prompted him to go on and he said when the liver guy looked at it, there really wasn't anything to see. I gathered my composure enough to say "But the oncologist said there was really very little change to my liver, and then he amended that and said two spots were gone but there was still a little pocket of weirdness in there but no actual structures." (Okay so my doctor didn't call it a pocket of weirdness but that's how I like to think of it). The radiation guy said no, there's been change and the liver guy says we just need to watch it and if it comes back, we'll treat it then. They'll scan me again near or at the end of radiation and see if anything is going on and if there is, they'll address it then but for right now, there is nothing to treat in my liver. Now I suspect that doesn't mean there's nothing in my liver. I don't think they can say that, but there is nothing of enough significance or substance to treat at this time.
As awesome as this sounds, I am having a hard time believing and embracing this news. This is the same scan I had done pre-surgery, back in early May. On May 10th, the oncologist made it sound like the liver hadn't improved, and there might not be anything we can do but "manage" it the best we can to keep it at bay for as long as we can. That was a downer meeting for sure. On May 11 is when I dived further into alternatives and began mediating, taking supplements, tweaking my diet even more by cutting out sugar, alcohol, and white bread/flour, and really working on my attitude, thinking, and faith. Then, on May 20, same oncologist, same scan....there were suddenly changes and options. Actually, two spots were gone and the last spot wasn't a structure anymore but still some sort of activity but we could zap it right out. This was a happy meeting. Then last week with the radiation guy there wasn't just one option for treatment for my liver but three! Yay! And now the liver guy (who I haven't actually met) says there's nothing to treat. CRAZY...it's all the same freakin' scan from May 7th! So it reminds me of a variation on the classic joke....How many doctors does it take to change a lightbulb? In my case four, except by the 4th doc the bulb doesn't need changing anymore!
I see my oncologist again next week on the 21st, and I am thinking about meeting with the liver guy face-to-face and see what he has to say directly. Or, I can just enjoy the news, wait for my new scan later this summer, and then make the rounds of specialists if needed.
I think this gives strong credence to the belief that God works in mysterious ways!
As awesome as this sounds, I am having a hard time believing and embracing this news. This is the same scan I had done pre-surgery, back in early May. On May 10th, the oncologist made it sound like the liver hadn't improved, and there might not be anything we can do but "manage" it the best we can to keep it at bay for as long as we can. That was a downer meeting for sure. On May 11 is when I dived further into alternatives and began mediating, taking supplements, tweaking my diet even more by cutting out sugar, alcohol, and white bread/flour, and really working on my attitude, thinking, and faith. Then, on May 20, same oncologist, same scan....there were suddenly changes and options. Actually, two spots were gone and the last spot wasn't a structure anymore but still some sort of activity but we could zap it right out. This was a happy meeting. Then last week with the radiation guy there wasn't just one option for treatment for my liver but three! Yay! And now the liver guy (who I haven't actually met) says there's nothing to treat. CRAZY...it's all the same freakin' scan from May 7th! So it reminds me of a variation on the classic joke....How many doctors does it take to change a lightbulb? In my case four, except by the 4th doc the bulb doesn't need changing anymore!
I see my oncologist again next week on the 21st, and I am thinking about meeting with the liver guy face-to-face and see what he has to say directly. Or, I can just enjoy the news, wait for my new scan later this summer, and then make the rounds of specialists if needed.
I think this gives strong credence to the belief that God works in mysterious ways!
Wednesday, June 6, 2012
Music to my ears....
Did you hear that? It was me exhaling a HUGE sigh of relief. Whew.......
Last week when I saw the rads doc for the consultation, I filled out new paperwork yet again. Angina? No. Diabetes? No. High Blood Pressure? No. And so the list goes on. No, no, no, just this f'ing cancer. I get to the neuro section and I did check dizziness because post-surgery I was having some dizziness and figured I better mark it. By the second week it had already improved but being the good, honest patient that I am, I checked it. Of course all my life I've gotten dizzy sometimes when I get up too fast...runs in my family, but this was that, plus a little more. Two new meds and not eating probably played a role also.
Anyway, the rads doc saw that and it sent up a red flag for him. Since I was having some dizziness, and the cancer managed to spread to my spine while I was on chemo, he wanted a brain scan. What???? He reassured me he didn't think anything was going on, but we needed to check to just make sure all was well. The PET scan only shows eyes to knees. Well my history with scans these last few months has totally sucked so I was not at all excited about a friggin' brain scan. But he consulted with my oncologist and he agreed I should get one done. So they scheduled it for the following Tuesday, which was yesterday. Only Bruce knew, I didn't want to alarm anyone. Surprisingly I managed to keep my anxiety pretty much in check, but still a very stressful few days. But today, one day after the scan, the rads doc comes in to check my measurements while I'm lying on the rads table and says "And oh, your brain scan was normal." Sweeter words have never been spoken! Well, at least not recently! Such a relief. But I'm on the danged rads table being measured and filmed and can't move to celebrate. But I did manage a smile and a happy tear or two! Others might have thought he was a little abrupt but I was happy that he cut to the chase and just threw it out there...no big preamble. So yayyyyy! My brain is NORMAL!!! I am just a headache-prone and dizzy chick with poor balance and crappy memory. Yay for me! I'll take it :)
Last week when I saw the rads doc for the consultation, I filled out new paperwork yet again. Angina? No. Diabetes? No. High Blood Pressure? No. And so the list goes on. No, no, no, just this f'ing cancer. I get to the neuro section and I did check dizziness because post-surgery I was having some dizziness and figured I better mark it. By the second week it had already improved but being the good, honest patient that I am, I checked it. Of course all my life I've gotten dizzy sometimes when I get up too fast...runs in my family, but this was that, plus a little more. Two new meds and not eating probably played a role also.
Anyway, the rads doc saw that and it sent up a red flag for him. Since I was having some dizziness, and the cancer managed to spread to my spine while I was on chemo, he wanted a brain scan. What???? He reassured me he didn't think anything was going on, but we needed to check to just make sure all was well. The PET scan only shows eyes to knees. Well my history with scans these last few months has totally sucked so I was not at all excited about a friggin' brain scan. But he consulted with my oncologist and he agreed I should get one done. So they scheduled it for the following Tuesday, which was yesterday. Only Bruce knew, I didn't want to alarm anyone. Surprisingly I managed to keep my anxiety pretty much in check, but still a very stressful few days. But today, one day after the scan, the rads doc comes in to check my measurements while I'm lying on the rads table and says "And oh, your brain scan was normal." Sweeter words have never been spoken! Well, at least not recently! Such a relief. But I'm on the danged rads table being measured and filmed and can't move to celebrate. But I did manage a smile and a happy tear or two! Others might have thought he was a little abrupt but I was happy that he cut to the chase and just threw it out there...no big preamble. So yayyyyy! My brain is NORMAL!!! I am just a headache-prone and dizzy chick with poor balance and crappy memory. Yay for me! I'll take it :)
Sunday, June 3, 2012
On the eve of radiation
So it's Sunday, and tomorrow I start radiation. I am excited to get going even though tomorrow will just be the spot on my spine. Amazing that they can do 10 zaps on that and it'll be gone. They want to zap the lymph nodes around my left breast too, but I have to get my arm up over my head for them to be able to do that. My first visit with them was last Wednesday, and I couldn't get my arm anywhere near over my head! So I've been stretching like a fiend. Probably too much those first couple of days so I've backed off a little. I can see progress, but I'm not sure I can get it over my head and as open as they want to see by tomorrow. That was my plan, but we'll see. If not, I'll keep working it and I plan to get into PT this week so that should help. As soon as I can get it up there without feeling like I'm being torn limb from limb, they'll start the rads up there too. After radiation, I'll get scanned again and we'll see how I am doing and what's next. Hopefully it will be clean and all we'll have to do is finish up the liver and I'll be good to go again!
In the meantime, I've just been trying to be more active and get out of the house more. When I sit around the house too much, even tho it's good for resting and all, I tend to get a little blue (ok sometimes a lot blue) so it's better for me to get out, have somewhere to go, etc., even though it tires me out and makes me sore! Sometimes I get grumpy and think to myself "This is not the way I planned to spend my summer!" Or even worse, "Look at all these healthy people without a care in the world!" Now I know that's not true, not fair, and horribly selfish of me and I quickly wish them all good health and blessings to counteract my crabbiness. I know everyone has their issues, but sometimes it does feel like I'm from a different planet but no one knows because on the outside I look just like them. Plus, gosh darn it, I had things to do this summer! Our annual trek to Breckenridge for the 4th of July, races to run, kayaking to enjoy, and just kicking back and relaxing. But I have to remind myself, every day, and often every hour, that no one knows what's in store for them. You read about people dying in car accidents or just recently here in Denver a police officer was hit and killed by a drunk driver while he was performing a traffic stop. Awful, just awful. There is no guarantee for any of us. In some ways, that is a freeing thought because it reminds us to be in the moment, enjoy the breeze, enjoy the noise, and enjoy the things that normally we would take for granted or even be annoyed by. So take a minute to enjoy where you are, right now, at this very minute that you are reading this. Close your eyes and drink it in.
And as for Breckenridge? So we'll go later for a longer visit when I am done with radiation. Races and kayaking? I'll get there, just maybe not this summer. Kicking back and relaxing? Not sure I'll ever really get there again but I plan to get much closer!! But in the meantime, I have lots of time to spend with family and friends over the next few weeks while I am doing radiation and plan to take advantage of it! I'll do my radiation in the morning, then have time to meet friends for coffee, go to the zoo, hit some museums, build up my stamina with some short hikes with friends, go to the movies, hang out with my daughter, and spend time with my husband, and the list goes on! I've always dreamed of writing a children's book and now would be the perfect time to work on that. Every day is a gift, whether you have cancer or not, so open it up and enjoy it! No use worrying about what is next until next becomes now. I need to get that tattooed on my forehead. :)
Much love to you all. My family and friends are my strength through all this so don't ever underestimate the power of your support!
In the meantime, I've just been trying to be more active and get out of the house more. When I sit around the house too much, even tho it's good for resting and all, I tend to get a little blue (ok sometimes a lot blue) so it's better for me to get out, have somewhere to go, etc., even though it tires me out and makes me sore! Sometimes I get grumpy and think to myself "This is not the way I planned to spend my summer!" Or even worse, "Look at all these healthy people without a care in the world!" Now I know that's not true, not fair, and horribly selfish of me and I quickly wish them all good health and blessings to counteract my crabbiness. I know everyone has their issues, but sometimes it does feel like I'm from a different planet but no one knows because on the outside I look just like them. Plus, gosh darn it, I had things to do this summer! Our annual trek to Breckenridge for the 4th of July, races to run, kayaking to enjoy, and just kicking back and relaxing. But I have to remind myself, every day, and often every hour, that no one knows what's in store for them. You read about people dying in car accidents or just recently here in Denver a police officer was hit and killed by a drunk driver while he was performing a traffic stop. Awful, just awful. There is no guarantee for any of us. In some ways, that is a freeing thought because it reminds us to be in the moment, enjoy the breeze, enjoy the noise, and enjoy the things that normally we would take for granted or even be annoyed by. So take a minute to enjoy where you are, right now, at this very minute that you are reading this. Close your eyes and drink it in.
And as for Breckenridge? So we'll go later for a longer visit when I am done with radiation. Races and kayaking? I'll get there, just maybe not this summer. Kicking back and relaxing? Not sure I'll ever really get there again but I plan to get much closer!! But in the meantime, I have lots of time to spend with family and friends over the next few weeks while I am doing radiation and plan to take advantage of it! I'll do my radiation in the morning, then have time to meet friends for coffee, go to the zoo, hit some museums, build up my stamina with some short hikes with friends, go to the movies, hang out with my daughter, and spend time with my husband, and the list goes on! I've always dreamed of writing a children's book and now would be the perfect time to work on that. Every day is a gift, whether you have cancer or not, so open it up and enjoy it! No use worrying about what is next until next becomes now. I need to get that tattooed on my forehead. :)
Much love to you all. My family and friends are my strength through all this so don't ever underestimate the power of your support!
Wednesday, May 30, 2012
Bring on the rads!
Hi. I am doing much better this week post surgery!! I was kind of surprised how hard that first week was. I've had surgery before, but this was more than I was expecting. My doctor warned me, but I thought oh that won't be me....I'll be fine in a day or two. Wrongo! I think some of it was mood-based and I've read that anesthesia can trigger some depression...but I felt hit by a really big, really mean truck and didn't like it at all. Oh well, much better this week!
We saw my surgeon yesterday for my post-op visit and despite how lousy I felt last week, she said I am healing "remarkably" well and she's very pleased with my healing. My incisions look great (well, beauty is in the eye of the beholder and all) and no concerns. She said my drains were close to being ready to come out (yay!) and that I was ready for radiation (double yay!). As of today, I've reached the criteria for getting the drains out so will do that tomorrow (triple yay!). As for my "remarkable" healing, I have to attribute that to some extent at least to all the meditating and focusing on healing I have been doing, my reiki, and all the positive thoughts, prayers and energy being sent to me by my family and friends. It truly is amazing to be the recipient of so much love and caring and it's making a difference.
Today, we saw the radiation oncologist. A different guy than I saw last time. The guy last time was good, but I just wasn't feeling it again to go back to him so I am seeing the one at Skyridge instead. He's a huge bald man who rides a red and white scooter to work. How can that not inspire confidence?? He wants to do 7 weeks and be aggressive which is fine by me. The typical course of radiation is 6-7 weeks. My oncologist said we'd do 4-5 weeks. But the radiation guy knows best on this so if wants to zap me for 7 weeks I am all for it. Since I've had radiation to the breast before, there are some possible risks, but nothing we can't handle. They can avoid the area of the previous tumor to some degree but they actually want to zap that again too. But the skin there is thinned and damaged from the radiation before so can become more damaged with more radiation.Worst case scenario I would develop an ulcer or sore there that wouldn't heal and I'd need a skin graft. Okay, not great, but it's not going to cause more cancer so I can handle it. They'll zap my spine at the same time and that will take just 10 visits so 2 weeks. So when can I start?? Tuesday! What about measurements and the simulation?? We can do that today! Yay! So off we went to the CT scan but dagnabbit I couldn't get my left arm up over my head for them to do the measurements. So that is my mission....get that arm up and over my head by Monday so we can do the measurements then and start the radiation on Wednesday. They did the measurements for the spine and they'll start treatment for that on Monday. I go again on Friday for "films" for my spine...whatever that is. It all got a little confusing as she was planning out my schedule. On Wednesdays, they have complimentary 30 minute massages paid for by the hospital by therapists with oncology background. No openings til June 20 but I'll be taking advantage of that for sure too. I knew there was a reason to stay at Skyridge!
The radiation oncologist also talked a little about what to do about my liver. He had three options which was nice to hear and we talked a little about each one. Not sure which one will be best for me, maybe one where they send in little radioactive beads that infiltrate the liver. So we'll see. Just nice to know there are options!
The only negative from today is that the radiation guy is thinking maybe I need a brain scan just to be sure nothing is going on up there. Now I hear the snickering, and many of you think nothing's been going on up there for quite some time...ha ha....but since I am prone to headaches, am having some dizziness (which I think is related to my surgery and barely eating for 10 days), and that it did go to my spine even while on chemo he's thinking we should check that out. So we'll see...he was going to check with my oncologist. I don't have any glaring symptoms and I know it's better to see what's there than not, but the stress and anxiety when I get these scans is pretty unbearable and I was just starting to feel better!
That's all for now. I am happy to be starting radiation soon!
We saw my surgeon yesterday for my post-op visit and despite how lousy I felt last week, she said I am healing "remarkably" well and she's very pleased with my healing. My incisions look great (well, beauty is in the eye of the beholder and all) and no concerns. She said my drains were close to being ready to come out (yay!) and that I was ready for radiation (double yay!). As of today, I've reached the criteria for getting the drains out so will do that tomorrow (triple yay!). As for my "remarkable" healing, I have to attribute that to some extent at least to all the meditating and focusing on healing I have been doing, my reiki, and all the positive thoughts, prayers and energy being sent to me by my family and friends. It truly is amazing to be the recipient of so much love and caring and it's making a difference.
Today, we saw the radiation oncologist. A different guy than I saw last time. The guy last time was good, but I just wasn't feeling it again to go back to him so I am seeing the one at Skyridge instead. He's a huge bald man who rides a red and white scooter to work. How can that not inspire confidence?? He wants to do 7 weeks and be aggressive which is fine by me. The typical course of radiation is 6-7 weeks. My oncologist said we'd do 4-5 weeks. But the radiation guy knows best on this so if wants to zap me for 7 weeks I am all for it. Since I've had radiation to the breast before, there are some possible risks, but nothing we can't handle. They can avoid the area of the previous tumor to some degree but they actually want to zap that again too. But the skin there is thinned and damaged from the radiation before so can become more damaged with more radiation.Worst case scenario I would develop an ulcer or sore there that wouldn't heal and I'd need a skin graft. Okay, not great, but it's not going to cause more cancer so I can handle it. They'll zap my spine at the same time and that will take just 10 visits so 2 weeks. So when can I start?? Tuesday! What about measurements and the simulation?? We can do that today! Yay! So off we went to the CT scan but dagnabbit I couldn't get my left arm up over my head for them to do the measurements. So that is my mission....get that arm up and over my head by Monday so we can do the measurements then and start the radiation on Wednesday. They did the measurements for the spine and they'll start treatment for that on Monday. I go again on Friday for "films" for my spine...whatever that is. It all got a little confusing as she was planning out my schedule. On Wednesdays, they have complimentary 30 minute massages paid for by the hospital by therapists with oncology background. No openings til June 20 but I'll be taking advantage of that for sure too. I knew there was a reason to stay at Skyridge!
The radiation oncologist also talked a little about what to do about my liver. He had three options which was nice to hear and we talked a little about each one. Not sure which one will be best for me, maybe one where they send in little radioactive beads that infiltrate the liver. So we'll see. Just nice to know there are options!
The only negative from today is that the radiation guy is thinking maybe I need a brain scan just to be sure nothing is going on up there. Now I hear the snickering, and many of you think nothing's been going on up there for quite some time...ha ha....but since I am prone to headaches, am having some dizziness (which I think is related to my surgery and barely eating for 10 days), and that it did go to my spine even while on chemo he's thinking we should check that out. So we'll see...he was going to check with my oncologist. I don't have any glaring symptoms and I know it's better to see what's there than not, but the stress and anxiety when I get these scans is pretty unbearable and I was just starting to feel better!
That's all for now. I am happy to be starting radiation soon!
Wednesday, May 23, 2012
Monday, Monday......
So we went on Monday to see the oncologist, get the pathology results from the surgery, and start some treatment. My last visit with the oncologist didn't go so great, so I have been working very hard on changing my attitude, changing my thoughts, and opening myself up to alternative treatments to support my recovery. Not that what the oncologist said was bad, but it just wasn't as good as I had hoped. So I dived into meditation (which I love like an addiction now), added turmeric and green tea extract to my daily regimen, and have been reading and doing a lot of soul-searching, literally. I have been really focused on healing and embracing all the healing thoughts, prayers, and positive energies sent my way in a very intentional way. And, trying to figure out what is missing in my life that allowed cancer to sneak back in. Focusing 24/7 on healing is exhausting, and soon I hope to find more balance, but that's where I was last week. After the brief euphoria of the surgery was over, I felt myself slipping into gloominess again and had to fight my way back. Like I said, exhausting.
So this past Monday was the day to see the oncologist and start the bone strengthener. I am still scratching my head a little over this, but the meeting went very well and I was filled with hope and energy by the end. I don't know if he'd had more time to really look at my results and think about my treatment, or if all that focusing on healing and having confidence in my doctors helped (I like to think it did!) but he painted a much more positive picture for my treatment than before. And things can start quickly and some can be done simultaneously. So here's the scoop. The pathology from the surgery showed it was multifocal, lots of crap going on in my breast, even some DCIS. Not a surprise there. It did show that of the 11 lymph nodes removed, 9 had cancer-stuff going on. This surprised my doc because on the PET and the MRI, my lymph nodes didn't light up. So, he says there was stuff in there, but not real active, but we still need to get rid of it. Since I had radiation before on that breast, radiation again had been out of the picture. But Monday he was saying since the lymph nodes are not on the chest wall and since my prior radiation wasn't the whole breast, just directly where the tumor was, we can do radiation again. Ok, cool. But what about the spot on my back, that was next in line for radiation I said. He said, oh we can do it at the same time. No waiting to do one area, and then the other. Sweet! So I'll be like a burger....cook me up on one side, flip me over, and cook me a little more. Sounds good to me!
So on to the liver. Last time he said there was a little change and you may recall I had 3 spots that lit up on my liver. Well, on Monday he says 2 spots are gone (these are the same results mind you...no new tests) and not visible on the PET or the CAT scan. I guess the PET scan provides a simultaneous CAT scan....didn't know that. The CAT shows structures and the PET shows metabolic activity. A tumor will show up on a CAT, and if it's eating lots of sugar it will light up as a hot spot on the PET. So spot #3, the biggest of the 3, no longer shows up as a structure but still lights up on PET. He said this means there's not a mass or tumor, but still some cancerous stuff going on in there. Ok so what do we do about that? Previously he had been talking about treating the liver like a chronic disease with meds and intermittent chemo to keep it at bay but that I probably wasn't a candidate for radiation there. That was the biggest bummer about that previous meeting. But Monday he starts talking about some radial-taxic (or something!) procedure that is a one-time zapping of the spot and that he'll find out where I need to go to get that done since not everyone does it. He had talked about this before, but seemed to have discarded it as an option. The radiation consult could be this week or next and I can get started on that as soon as I am healed enough from the surgery. He said probably 4, maybe 5 weeks of radiation (5 days a week). Six weeks is the usual, and my dad did 7, so I told him I would do seven too if it made a difference! Then I am thinking the radial-taxic whatever could happen right after that. Or maybe during...who knows? I didn't think to ask that question but it sounded like that would be after. Zap me, fry me, do whatever needs to be done!
He also had been talking about starting me on a medication to systemically suppress any estrogen I have left in my body to basically starve the remaining cancer cells. Like Tamoxifen, but for post-menopausal women. So I asked when can I start that, and he looked at his watch and said how long does it take you to get to the pharmacy? So I started the generic of Femara on Monday evening. He also reassured me that the muscle pull like feeling in my thigh is indeed a muscle pull (my thighs were included in all the testing) and that the scan is comprehensive to the knee. Rarely does anything happen below the knee. So that made me feel better. It's really easy to start thinking that every new tweak and pain is a new spot.
So it was just a strange meeting and both Bruce I and were like, this is very different in tone and treatment options than last time but not because of any new results, just seemingly a change in perspective.....but whatever the difference I am so grateful and felt so energized!
After the meeting it was onward into the infusion room to start my bone strengthener. They were slammed and it took awhile to get it started. My favorite infusion nurse was there.....I think I wrote about him in a previous blog when he was subbing at Skyridge. We had to go to Rose on Monday since my doc was leaving town on Tuesday for the rest of the week, he splits his time between Rose and Skyridge. Anyway this nurse was just awful, to me, to my visitors, to everyone. I even had really good veins still back then and he couldn't find one. Now they suck and I was just cringing about him doing my IV. So I am watching him and the lady nurses and it looks like I'm about to be assigned to him. Bruce had stepped out for a minute, so I went over to the two other nurses and asked them if they could take care of me because I had had him down at Skyridge and it was very "unpleasant." I tried to be nice, but assertive. They didn't bat an eye and said no problem. When she came over to get me started I tried to mitigate it a little and said that maybe he was just having a bad day that day, but she muttered something about yea maybe. He did seem nicer to the other patients than he had been at Skyridge, but just something about him. I guess they can't all be amazing.
My infusion went fine, finding a vein was tough but she did and it's a quick drip...about 16 minutes and then a little more for some saline. All went well. She pulled out the IV and it was time to go when I started to feel wrong. Bruce went and got the nurse. My chest tightened, and if I breathed too deep it would trigger coughing. I was coughing some stuff up and just escalating. My doc came in, the nurse started a new IV and they gave me steroids and benedryl. They put oxygen on me. The nurse supervisor came over and held my hand and talked me off the ledge so to speak, another oncologist was standing nearby and my favorite infusion nurse was helping too. I had my eyes closed and was trying to keep my breathing as calm as I could but could hear the flurry of activity around me. It was very scary and I'm still not sure what it was. Typically the drug I was getting doesn't cause an allergic reaction, but they felt that is what it was. Just weird that it was at the end of the infusion. I've also had that happen before, just not to that degree, after every round of chemo. I'd noticed that about 2-3 days post infusion, the nausea would go away but my chest, right in the middle, would feel pressure and I would cough more throughout the day. More of an annoyance than anything else. I talked with my doc about it and they thought it might be heartburn or reflux. Chemo can cause the stomach to create more acid so we tried a few different meds to help with that but I really didn't notice a difference. Bruce said as he watched me, it looked exactly like what he has experienced with a really bad reflux attack. So I don't know what it was. Allergic reaction, weird reflux experience. I hadn't been eating so it makes sense that whatever was in my tummy was just acid and maybe the infusion triggered something. The Benedryl helped tho, but made me very sleepy and kind of clouded over the happy and energized feeling I was having so I was bummed about that. I'm back on the reflux medication so we'll see if that helps anything and I am sure that when I get the bone strengthener again (it's monthly) they'll prime me with benedryl first. Bruce and I were thinking my poor body is probably just so tired of things being pumped into it! That night, the doc said to watch for a temperature. That 5% of people will spike a temp and that's it's nothing to worry about and just treat it with Advil. Each time, the temp will go down and after a few infusions it won't happen anymore. I was so excited that at least Monday I did NOT have a temp. Well, my glee was premature...I got it on Tuesday night instead! But I am fine again today so no biggie.
So that was my Monday! All in all, it went very well and I feel energized and confident with what is coming next. I am starting to see some light at the end of this tunnel but am still taking it one day at a time. I feel so blessed with all the love and support from everyone and want you all to know that as part of my meditation every day, I open my heart to receive all the love, prayers, and positive energy being sent to me from near and far. It is an amazing feeling. I truly believe that every little positive thought, prayer, and message of strength finds it's way to me and is helping me to heal.
So this past Monday was the day to see the oncologist and start the bone strengthener. I am still scratching my head a little over this, but the meeting went very well and I was filled with hope and energy by the end. I don't know if he'd had more time to really look at my results and think about my treatment, or if all that focusing on healing and having confidence in my doctors helped (I like to think it did!) but he painted a much more positive picture for my treatment than before. And things can start quickly and some can be done simultaneously. So here's the scoop. The pathology from the surgery showed it was multifocal, lots of crap going on in my breast, even some DCIS. Not a surprise there. It did show that of the 11 lymph nodes removed, 9 had cancer-stuff going on. This surprised my doc because on the PET and the MRI, my lymph nodes didn't light up. So, he says there was stuff in there, but not real active, but we still need to get rid of it. Since I had radiation before on that breast, radiation again had been out of the picture. But Monday he was saying since the lymph nodes are not on the chest wall and since my prior radiation wasn't the whole breast, just directly where the tumor was, we can do radiation again. Ok, cool. But what about the spot on my back, that was next in line for radiation I said. He said, oh we can do it at the same time. No waiting to do one area, and then the other. Sweet! So I'll be like a burger....cook me up on one side, flip me over, and cook me a little more. Sounds good to me!
So on to the liver. Last time he said there was a little change and you may recall I had 3 spots that lit up on my liver. Well, on Monday he says 2 spots are gone (these are the same results mind you...no new tests) and not visible on the PET or the CAT scan. I guess the PET scan provides a simultaneous CAT scan....didn't know that. The CAT shows structures and the PET shows metabolic activity. A tumor will show up on a CAT, and if it's eating lots of sugar it will light up as a hot spot on the PET. So spot #3, the biggest of the 3, no longer shows up as a structure but still lights up on PET. He said this means there's not a mass or tumor, but still some cancerous stuff going on in there. Ok so what do we do about that? Previously he had been talking about treating the liver like a chronic disease with meds and intermittent chemo to keep it at bay but that I probably wasn't a candidate for radiation there. That was the biggest bummer about that previous meeting. But Monday he starts talking about some radial-taxic (or something!) procedure that is a one-time zapping of the spot and that he'll find out where I need to go to get that done since not everyone does it. He had talked about this before, but seemed to have discarded it as an option. The radiation consult could be this week or next and I can get started on that as soon as I am healed enough from the surgery. He said probably 4, maybe 5 weeks of radiation (5 days a week). Six weeks is the usual, and my dad did 7, so I told him I would do seven too if it made a difference! Then I am thinking the radial-taxic whatever could happen right after that. Or maybe during...who knows? I didn't think to ask that question but it sounded like that would be after. Zap me, fry me, do whatever needs to be done!
He also had been talking about starting me on a medication to systemically suppress any estrogen I have left in my body to basically starve the remaining cancer cells. Like Tamoxifen, but for post-menopausal women. So I asked when can I start that, and he looked at his watch and said how long does it take you to get to the pharmacy? So I started the generic of Femara on Monday evening. He also reassured me that the muscle pull like feeling in my thigh is indeed a muscle pull (my thighs were included in all the testing) and that the scan is comprehensive to the knee. Rarely does anything happen below the knee. So that made me feel better. It's really easy to start thinking that every new tweak and pain is a new spot.
So it was just a strange meeting and both Bruce I and were like, this is very different in tone and treatment options than last time but not because of any new results, just seemingly a change in perspective.....but whatever the difference I am so grateful and felt so energized!
After the meeting it was onward into the infusion room to start my bone strengthener. They were slammed and it took awhile to get it started. My favorite infusion nurse was there.....I think I wrote about him in a previous blog when he was subbing at Skyridge. We had to go to Rose on Monday since my doc was leaving town on Tuesday for the rest of the week, he splits his time between Rose and Skyridge. Anyway this nurse was just awful, to me, to my visitors, to everyone. I even had really good veins still back then and he couldn't find one. Now they suck and I was just cringing about him doing my IV. So I am watching him and the lady nurses and it looks like I'm about to be assigned to him. Bruce had stepped out for a minute, so I went over to the two other nurses and asked them if they could take care of me because I had had him down at Skyridge and it was very "unpleasant." I tried to be nice, but assertive. They didn't bat an eye and said no problem. When she came over to get me started I tried to mitigate it a little and said that maybe he was just having a bad day that day, but she muttered something about yea maybe. He did seem nicer to the other patients than he had been at Skyridge, but just something about him. I guess they can't all be amazing.
My infusion went fine, finding a vein was tough but she did and it's a quick drip...about 16 minutes and then a little more for some saline. All went well. She pulled out the IV and it was time to go when I started to feel wrong. Bruce went and got the nurse. My chest tightened, and if I breathed too deep it would trigger coughing. I was coughing some stuff up and just escalating. My doc came in, the nurse started a new IV and they gave me steroids and benedryl. They put oxygen on me. The nurse supervisor came over and held my hand and talked me off the ledge so to speak, another oncologist was standing nearby and my favorite infusion nurse was helping too. I had my eyes closed and was trying to keep my breathing as calm as I could but could hear the flurry of activity around me. It was very scary and I'm still not sure what it was. Typically the drug I was getting doesn't cause an allergic reaction, but they felt that is what it was. Just weird that it was at the end of the infusion. I've also had that happen before, just not to that degree, after every round of chemo. I'd noticed that about 2-3 days post infusion, the nausea would go away but my chest, right in the middle, would feel pressure and I would cough more throughout the day. More of an annoyance than anything else. I talked with my doc about it and they thought it might be heartburn or reflux. Chemo can cause the stomach to create more acid so we tried a few different meds to help with that but I really didn't notice a difference. Bruce said as he watched me, it looked exactly like what he has experienced with a really bad reflux attack. So I don't know what it was. Allergic reaction, weird reflux experience. I hadn't been eating so it makes sense that whatever was in my tummy was just acid and maybe the infusion triggered something. The Benedryl helped tho, but made me very sleepy and kind of clouded over the happy and energized feeling I was having so I was bummed about that. I'm back on the reflux medication so we'll see if that helps anything and I am sure that when I get the bone strengthener again (it's monthly) they'll prime me with benedryl first. Bruce and I were thinking my poor body is probably just so tired of things being pumped into it! That night, the doc said to watch for a temperature. That 5% of people will spike a temp and that's it's nothing to worry about and just treat it with Advil. Each time, the temp will go down and after a few infusions it won't happen anymore. I was so excited that at least Monday I did NOT have a temp. Well, my glee was premature...I got it on Tuesday night instead! But I am fine again today so no biggie.
So that was my Monday! All in all, it went very well and I feel energized and confident with what is coming next. I am starting to see some light at the end of this tunnel but am still taking it one day at a time. I feel so blessed with all the love and support from everyone and want you all to know that as part of my meditation every day, I open my heart to receive all the love, prayers, and positive energy being sent to me from near and far. It is an amazing feeling. I truly believe that every little positive thought, prayer, and message of strength finds it's way to me and is helping me to heal.
Sunday, May 20, 2012
Surgery
Hello again. I've been out of commission the past few days but wanted to let you know how surgery went. It's kind of hard to put into words and I'm not sure I've sorted out all the emotions myself. But this past week has probably been one of the worst, if not the worst of my life. Having lost both my parents, I know what pain feels like and I would have said those were the worst weeks of my life. But this has been a very different pain. From hearing the news of my treatment not going as well as expected, to finding a new spot, to just a few days later having a major surgery has been overwhelming. Don't get me wrong, I've wanted these off since January, but the actual reality of having a body part or parts removed is very challenging to the psyche, especially when you know it's not the feather in the cap of treatment. If this was it, and I knew the cancer was gone like I did with the lumpectomy I'd be dancing in the street! So a whirlwind of emotions combined with not eating made last week a very rough week. But I am trying to rise to the occasion with alternative adjunctive treatments and ways of thinking.
But back to my actual surgery, it all went very well. Even a little faster than they thought. I have various things now dangling from my body which is strange, but I'm already pretty used to it. I have a pain pump, more like a pressurized ball, in a little pouch I keep with me all the time that's connected to some tubing that goes into each breast, well, where there was a breast. Over the course of 2-3 days, it releases pain medication all on it's own so that's pretty cool. Then one each side, I have a drain to draw away the fluid from the chest area that builds up after surgery. These are kind of gross and hang from my sides like little squeezey grenades. I have to empty them every few hours and track how much I'm draining. When I get down to a certain amount in a 24 hour period, the doc will take them out. Takes 10 days to 3 weeks generally so we'll see. They're kind of obnoxious, and I guess when I get my energy up and go out somewhere I can pin them under my clothes so the world doesn't have to see. I'm pretty gross in general right now....no shower in 3 days! They want to take the pain pump out first. Even still, I'm not in a big rush to take the compression bra off and really see what's going on in there. The breasts feel like they are still there, but clearly they are not.
Staying overnight in the hospital is mandatory for this, and I had to stay an extra day because I had a fever and a wonky white blood cell count. They took a chest xray and urinalysis prior to surgery looking for infection, but didn't find anything. My WBC was super high, which usually means a big infection but I had a shot of Neulasta a few days before because it was low, so they decided it had just done it's job really well and over-pumped me with white blood cells. That count came down, but the fever persisted and got a little higher. So they kept me another night, gave me intravenous antibiotics and early Saturday morning it came down to 98 and stayed there so they sent me home. I think my body just reacts to surgery like that, I always get a temp after. But better safe than sorry and it/s a REALLY nice hospital, like a resort, so I didn't mind the extra night. But I was ready to come home too. It's hard to sleep in those places between them checking your vitals, hanging your antibiotic, drawing blood, etc all night!
It's hard not to think about what's next and that's been the most emotional for me. I broke down before the surgery while being prepped and I think everyone thought it was nerves before the surgery. It wasn't. Maybe a little but I just couldn't believe where I was, what was happening, and what was going to happen next. Finally they let Bruce come back to the prep area and holding his hand gave me strength. We see the oncologist tomorrow for the new plan so I am eager to hear what he says and eager to present what I would like to see happen too. I am working on attacking this from all sides and as aggressively as possible. I am so grateful for all the support I have been getting for some of the new things I am trying. It would be easy to laugh and think she's crazy, but everyone has been very positive and supportive of whatever I do. Near and far, friends and family are creating their own positive imagery of my battle and I think that is huge. All hands on deck to fight off this beast!
The last thing I want to say was while I was in the hospital, I allowed myself to be taken care of, completely. I did what I wanted, when I wanted to. And having people stop by to visit, bring treats or flowers, deliver flowers to my back yard, offer to stay overnight, and send me messages online was a salve to my wounds, physically and emotionally and for that I am forever grateful. I didn't take my computer to the hospital, so got the messages and posts when I got home but to hear and feel all the love that was out there for my during my surgery was very moving to me.
So for tomorrow, send your faith to my doctor and believe like I do that whatever comes next is going to work and kick this crap to the curb.
But back to my actual surgery, it all went very well. Even a little faster than they thought. I have various things now dangling from my body which is strange, but I'm already pretty used to it. I have a pain pump, more like a pressurized ball, in a little pouch I keep with me all the time that's connected to some tubing that goes into each breast, well, where there was a breast. Over the course of 2-3 days, it releases pain medication all on it's own so that's pretty cool. Then one each side, I have a drain to draw away the fluid from the chest area that builds up after surgery. These are kind of gross and hang from my sides like little squeezey grenades. I have to empty them every few hours and track how much I'm draining. When I get down to a certain amount in a 24 hour period, the doc will take them out. Takes 10 days to 3 weeks generally so we'll see. They're kind of obnoxious, and I guess when I get my energy up and go out somewhere I can pin them under my clothes so the world doesn't have to see. I'm pretty gross in general right now....no shower in 3 days! They want to take the pain pump out first. Even still, I'm not in a big rush to take the compression bra off and really see what's going on in there. The breasts feel like they are still there, but clearly they are not.
Staying overnight in the hospital is mandatory for this, and I had to stay an extra day because I had a fever and a wonky white blood cell count. They took a chest xray and urinalysis prior to surgery looking for infection, but didn't find anything. My WBC was super high, which usually means a big infection but I had a shot of Neulasta a few days before because it was low, so they decided it had just done it's job really well and over-pumped me with white blood cells. That count came down, but the fever persisted and got a little higher. So they kept me another night, gave me intravenous antibiotics and early Saturday morning it came down to 98 and stayed there so they sent me home. I think my body just reacts to surgery like that, I always get a temp after. But better safe than sorry and it/s a REALLY nice hospital, like a resort, so I didn't mind the extra night. But I was ready to come home too. It's hard to sleep in those places between them checking your vitals, hanging your antibiotic, drawing blood, etc all night!
It's hard not to think about what's next and that's been the most emotional for me. I broke down before the surgery while being prepped and I think everyone thought it was nerves before the surgery. It wasn't. Maybe a little but I just couldn't believe where I was, what was happening, and what was going to happen next. Finally they let Bruce come back to the prep area and holding his hand gave me strength. We see the oncologist tomorrow for the new plan so I am eager to hear what he says and eager to present what I would like to see happen too. I am working on attacking this from all sides and as aggressively as possible. I am so grateful for all the support I have been getting for some of the new things I am trying. It would be easy to laugh and think she's crazy, but everyone has been very positive and supportive of whatever I do. Near and far, friends and family are creating their own positive imagery of my battle and I think that is huge. All hands on deck to fight off this beast!
The last thing I want to say was while I was in the hospital, I allowed myself to be taken care of, completely. I did what I wanted, when I wanted to. And having people stop by to visit, bring treats or flowers, deliver flowers to my back yard, offer to stay overnight, and send me messages online was a salve to my wounds, physically and emotionally and for that I am forever grateful. I didn't take my computer to the hospital, so got the messages and posts when I got home but to hear and feel all the love that was out there for my during my surgery was very moving to me.
So for tomorrow, send your faith to my doctor and believe like I do that whatever comes next is going to work and kick this crap to the curb.
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