No magic bullet

So we got the second opinion today and nothing earth shattering. I am somewhat relieved that he basically said the same thing my own oncologist said, but also vaguely disappointed that he didn't have any secret tricks up his sleeve. He said Dr. Sedlacek's plan was a reasonable approach. He has some other meds that he seemed to like better, but he wasn't very convincing so I need to do some research on those. They all start with E's and have very complicated names! He said the BK120 clinical trial made sense. (Bruce has since renamed the BK drug the "Burger King drug"--leave it to my hubby to lighten the mood :) ) Dr. Elias is the principal investigator of his own clinical study that is looking at androgen receptors. Turns out androgen receptors are involved in prostate cancer and I guess there is a link or some serious theorizing going on the androgen receptors might be involved in breast cancer too. Currently they test for estrogen (for which I am positive), progesterone (for which I am negative) and Her2Nu (a growth factor receptor for which I am negative). They don't test for the androgen receptors since their role in BC is all very new. He thinks I am a good candidate for his study too. If things get worse, that's when we "throw the book at it" and look at more chemo, rads, etc. I'd rather throw the book at it now, but that doesn't seem to be the approach to take, or make a huge difference he said. Better to try to manage it with the drugs we haven't tried yet. Less side effects and less trauma to my body. I guess it makes sense. Like if I had a small heart attack that they could fix with a stent, they wouldn't be rushing in to do a quadruple by-pass. I just want to find the med that will stabilize me!

Apparently all of these options are open to me, at any time, in any order. I can try something, if it doesn't work I can try something else. I have the "luxury" of time. Let me tell ya tho, it doesn't feel very luxurious. I'd rather have the luxury of no worries and a clean bill of health, or at least a spa day! The hardest part of this for me seems to be the fact that we are no longer on the "get rid of it" path but on the "let's manage it" path. Still not a bad path to be on, but it's hard to let go of the hope of being cancer-free. And you know what? I might just not let go. Who's to say? If they can find the drug that will maintain me for several years, who's to say they might not have something even better down the road?

On a side note....it feels a little weird to have doctors pitching clinical trials at me. Take my drug....no take my drug. Although Sedlacek isn't an actual investigator, he's just working with the researchers by allowing access to his patients and following the protocol. But still...feels kind of like when I'd go to a new dentist and see visions of a new boat in his eyes! But I guess it's good to be wanted!

Many thanks to you all for your positive thoughts, support, and well wishes. You may not feel like you are helping but you are! Now....let's think about something more pressing....I gotta get going on my Christmas shopping! Savor each day, it's all you can do :)

On the eve of my second opinion

Well this fine Tuesday evening has me contemplating what's in store for me tomorrow. I am mixed in my emotions; part of me me dreads it and part of me is excited. I keep trying to channel the excited part, but it's hard to not feel the fear burbling as we get closer. To get us all on the same page, let me recap the last couple of weeks. I had my 6 month follow up PET scan on November 26 with results on the 28th. Some things look better, some things look worse. All the crap on the left is gone and clean so that's good news, but not unexpected since they took everything off over there. The spot on my spine (L1) is gone. Nothing in my lungs. There hasn't been to this point but I'm just always very relieved when they tell me my lungs are clear! The liver looks about the same, some say worse, but the findings are misleading. I had 3 spots last January on my liver, down to 2 in May. I still have 2, but they say one is new. Well if one is new, what happened to the other one? So I am confused on that one. Most discouraging are two new faint spots, a new one on my spine (T10) and one on my left proximal femur along with a lymph node on the right lighting up. How can I have a lymph node on the right light up when there's never been any disease there you ask? Well, maybe you aren't asking that but I did. When they remove so many from the left, the fluid still needs to drain somewhere so sometimes it finds it's way to the right and spreads the disease that way. Great. Thanks. Way to share.

So after that fun news, the talk turned to treatment. Clearly the estrogen suppressant  medication I've been on for 4 years ain't cuttin' it (first Tamoxifen, now Femara) so he said we would try a different med that's pretty new.  It's called Faslodex and it's an estrogen receptor blocker. He also recommended I participate in a clinical trial that is pairing the Faslodex with an experimental drug theorized to shut down the pathways cancer creates for itself that allows it to spread and be so resistant. Did you know cancer can create it's own blood vessels to feed itself? I didn't. Damned sneaky stuff. Bad thing about the study tho is that it's a very rigorous protocol, lots of testing, and I might get a placebo. They would check me frequently but I don't want to waste even a few months on a medication that might just be a placebo. So I am unsure about that one. So that was the plan presented: Faslodex plus the clinical trial.

I asked about radiation, surgery, chemo, etc and he said we need to take a systemic approach. I get that. I really do. I understand that for every spot we can see there are more lurking, undetected. But both Bruce and I felt a little disappointed that he really wasn't open to any other ideas. I want to attack what I can see and what I can't see. I want to attack it all. I don't want to save the big guns for later when I'm really sick. I'm not that sick right now. In fact, I am danged healthy if I just didn't have this cancer-crap. I am asymptomatic so I feel like I have a critical window here for trying to beat this. Not just manage it like a chronic disease. Don't get me wrong, managing cancer like diabetes or something is a great goal and if that's the best I can I do I'll take it. The doctor asked me if I thought I could live another 20 years like this and I turned it back on him and asked him "Can I live another 20 years like this?" He said yes and that the goal in cancer is still looking for a cure, but also really shifting towards figuring out how to manage it like a chronic disease. I think that's great, but I'm just not ready to think that's my only option right now and I need to hear more, hence the second opinion. I don't want to sound greedy, but I guess I am. I know many cancer patients hear much more discouraging news and much shorter time frames. I am grateful for 20 years as a realistic possibility. I really am. But I'm not ready to say that's the best we can do. I did see my radiation guy a few days later and he was a little more broad-minded. He still recommended the systemic first, but said once I was "stabilized" they could go in and zap the spots we could see.

So, my second opinion is tomorrow, with a top-rated breast cancer doc and a top-rated cancer hospital here in Denver. They've had all my records since last Wednesday. I am mostly excited and eager to hear what he has to say. In my fantasy brain he tells me there's been a mistake and my "hot spots" really aren't cancer and I am fine. Or that he has this amazing treatment he knows will fix me right up. I have to keep telling my fantasy brain to chill. I like the enthusiasm but we do have stay realistic here. If he gives me the same advice as my oncologist, I guess I'll feel a little disappointed that there isn't something better, but I'll feel more confident that we're on the right track. If he comes up with a different plan, I'll have some serious thinking to do! My fear lies in worrying that he'll tell me the cancer is not what we thought, that it's some sort of different cancer. Or that he'll tell me I need 16 more tests before he can go further! Please no more tests!!! ;)

So I that's where we're at and I'll let you know what I find out!

Still more grossness

This post is a follow up, and still not for the faint of heart! On October 17, I had a drain put in the hematoma area since just aspirating wasn't doing the trick. The drain was painful and miserable and then, all by itself it fell out last Friday. It's called a pigtail drain because the part that goes in your body is curled like a pigtail, or a hook, and is supposed to be really hard to get out unless you cut the string that makes it go straight. But, mine came out, still all curled.. Sunday I started feeling flu-ish and had a temp. Once you've had cancer, everyone gets very excited about temps because it could signal an infection and they get very concerned about that. So I called on Monday and sure enough, they thought it was likely an infection and got me started on an antibiotic. Today, Tuesday, I went in to see the doc and she confirmed that it's an infection. Now, read no further if you can't handle blood, gore, and general nastiness. Hmm, you're still reading....okay then......Well she decided she needed to open me up right then and there and get all the fluid/blood out. That I kind of expected. But, to make it heal we have to keep it open. So she made about an inch long incision down to my chest wall (not really as bad as it sounds since really all I have now is chest wall!) and squished the fluid/blood out. No pus so that was good (I told you this was gross). This is where it gets really gross though. We have to keep it open so that it heals from the bottom up. If she let it just close up on it's own, the infection would still be in there and it would just puff up again. So to keep it open, she packed it with about 16 inches of narrow gauze....like a snake. The gauze will act like a wick and pull the yuckiness out. Then I have a bandage over the incision to collect the yuckiness. By their account, this bandage will get "drenched" and I'll need to change it frequently at first until it starts to heal. But here's the fun part: twice a day I get to pull the old gauze out, pack the wound with new gauze, and then bandage it up. I have to keep everything super sterile and they gave me my own snazzy doctor scissors and tweezers to use. Along with a bunch of extra long Q-tips which are what I'll use to pack the gauze into the wound. Geesh...should have been a nurse. No, this is why I'm NOT a nurse!!!

I have handled a lot of things done to my body. From getting my wisdom teeth pulled with just novocaine at the regular dentist (apparently others my age all went to oral surgeons...who knew??), to surgery on my feet in high school, and now all the assorted things I've had done to get rid of the breast cancer. Each one has been no big deal. Well, maybe not no big deal but I've taken it in stride. A couple of core biopsies. A D&C last summer. Innumerable IVs and pokes. My breast after the lumpectomy looked like a mack truck had driven over it and I had to take care of the incision. The bi-lateral mastectomy, well, you can imagine the aftermath of that, but remember I had two drains then and two pain pump tubes going in at the top. Four tubes going into one's body is a lot to manage and care for! Then this last drain. When it fell out, I was pretty woozy by the whole thing. So I am not to sure how I will manage this. The idea of pulling bolld-soaked gauze OUT of my body and then PACKING new stuff back in....I have to admit I'm not sure I'm up for this. She said I can go to urgent care, go to the ER, or go to their office and have it done, but really? Twice a day? So I'm thinking I just have to suck it up and remember that this too will pass. There were some tears in the doctors office today. Not from pain, but emotional tears. The saying "It's always something" has been very true in my case and to be honest, it's been exhausting. I am just so tired of being sick and of having to do things I never thought I would have to do. But, then I remind myself, I am here. I AM HERE. Three very powerful words that I am fortunate and grateful to be able to say. And as long as I am here, I can handle the gross stuff. Well, no guarantees I won't barf while doing it.... but I can do it!

Not for the faint of heart

Hello again! So let me warn you in advance...this post is a little gory. It has nothing to do with cancer....but a side-effect I am experiencing from the surgery and PT. Not sure why I feel the need to blog about it, maybe because it involves blood and grossness and we are approaching Halloween afterall.

So, almost a month ago, I noticed a large swollen area along my left side-chest area. This area was involved in the surgery and the radiation so has had a tough few months. I thought it was a seroma. A pocket of fluid that builds up following surgery. I guess surgery leaves space, and sometimes fluid will build up and fill it up. So I scheduled to see my surgeon but she couldn't see more for another week. The thing is kind of hard, painful, just sort of nasty so I was eager to get it off. Plus it's on the side where the cancer was so psychologically having another "mass" there is disquieting. If you fan your fingers really wide, and imagine a hot dog along the tops of your fingers from your index to your ring finger, that gives you a sense of shape and size. It even curves like that. So I go in and she's unsure why I'd develop a seroma this late after surgery. But as she drains it, she gets all happy because it's blood. Surgeons are weird. Anyway, she says it's a good thing because a seroma this late would be odd, and seromas are harder to get to go away. So she's all happy and keeps wanting to show me. I look over and it's a freakin' turkey-baser sized syringe filled with oogy old dark blood. YUCK!!! The area deflates right down, feels better immediately, and I'm a happy camper. It's a hematoma and the doc said it's likely that the PT inadvertently tore a vessel while working on me. The tissues and vessels are pretty fragile I guess from all the radiation and it's not uncommon to have this happen, so it's not the PT's fault at all (although she feels bad about it).  So the little vessel bled and clotted, and the swelling was the clot being broken down by my body. It was all old, dark blood. No new blood or bleeding. Eventually it would reabsorb all by itself, but since it was painful and interfering with my range of motion and mobility, draining it was the way to go. She said I should be all set, it shouldn't come back, and I was good to go. Awesome :)

Three days later, like a marshmallow in the microwave, it puffed all up again. Except it's not soft like a marshmallow! It's hard again and painful and danged annoying. So another week goes by before I can get in again. She drains it again. This time the poking really hurts. And, she could only get about half of it to drain and said it would probably just fill right up again. So, we can keep aspirating it, or insert a surgical drain. Yuck. Having drains dangle out of your body is not fun, but neither is being stuck with a turkey-baster syringe every week either.  So I opted for the drain. Easy procedure she says....it's called a "pigtail" drain and they can just pop it in the same day using ultrasound as a guide, no big deal. So I call to get that set up and um, it's a little more involved than that. Once again, I had to wait a week (seems to be the magic time frame) and my appointment is tomorrow. I have to be at Skyridge at 7:30 am and Bruce has to take me. They'll knock me out with "conscious sedation" so I'll be somewhat coherent and able to follow simple directions, but pretty out of it otherwise and with no memory of it. I've been told I'll reveal all my deep dark secrets......so sorry docs, it's gonna be a boring morning. Then they'll watch me for an hour or so after and make sure I'm all awake and then Bruce can take me home. I don't know how long I'll wear it for but it will be smaller than the mastectomy drains so I am hoping it won't be a big deal to take care of it. But yikes, who knew? Sorry if you are totally grossed out now. My family was when I told them and they made me stop talking about it!

So if you recall, at my last oncology appointment in September the docs called me "medically boring." I guess my body took offense and decided to shake things up a bit. But, this too shall pass :)

Side effects, schmide effects

Wow...so it's been since mid-July since I last posted. Not a lot has happened, which is a good thing I guess! In fact, at my last oncologist visit in September they called me "medically boring." Well, I've been trying to change that. Nothing major, but I've developed a hematoma. Sounds worse than it is. But on my left side, I have a lump. No no no! Not THAT kind of lump. But a swelling, is that a better word? Turns out at some point, probably in PT, a vessel was torn. Apparently that's not uncommon after a surgery like mine and radiation. The radiation makes everything pretty fragile for awhile. So the vessel tore and clotted off and my body is breaking the clot down. To do that tho, it makes it all swell up. I've had it drained twice now, and < GORE ALERT > they use a turkey baster-type syringe and it's all old blood that comes out. Ewww. It's pretty gross. I could let it go and eventually my body would reabsorb it all, but it hurts. So, since it came back after the first draining within days, and the doc thinks it'll fill back up again, the next step is to put in a little drain put in that will stay in for awhile. Not as big as the drains after my surgery, but a little one that would stay in awhile. I'm not thrilled about that, but if that's what it takes to make this go away and feel better than that's what I'll do. It restricts my range of motion on my left so I can't stretch as well, which is making everything tight again and hurty, and it's very uncomfortable sleeping. To prevent lymphedema, my PT has me wearing my compression sleeve and glove every day. She doesn't want any of the fluid from the hematoma going in my arm. I don't know if it can do that, but I'm a cooperative sort of gal and try to follow directions so I'm wearing the dang thing. It's a hot look. The glove is a half-glove so I've got sort of an early-Madonna thing going on. I should bedazzle the thing, add some lace....

But other than a handful of side-effects, I am doing great. Besides, what's a few side-effects right? I'll take it. Mostly I'm still pretty tired. I have a weird nerve twinge off and on in one of my toes. This hematoma-thingy. Some memory issues -- especially related to appointments so I have to write everything down! Some aches and pains... ironically the med I take to strengthen my bones also causes bone pain. My vertigo is a little worse--if I turn my head sometimes it makes me woozy-- which is a side-effect of the Femara, the estrogen suppressant I take (which also causes hot flashes!). And Bruce and I went on a hike a few weeks ago that painfully highlighted my lack of stamina. But like I said, I'll take it. Sure as hell beats the alternative. Plus many of my female friends, of a certain age such as myself, report many of the same issues! So who knows what is disease-related, treatment-related, or just plain age-related!!

I have another month til my PET scan. I admit I'm rather nervous about the whole thing but really trying to focus on the moment and do what I can to promote my health and mental well-being. Setting boundaries is a major goal these days so I don't get overwhelmed or over-extended. It's hard to say no, but sort of liberating too. I don't have to be involved in everything and the sun still comes up the next day! Go figure! So keep me in your prayers, keep sending those positive thoughts, and I'll let you know how things go next month.

Anyone need a boost?

Anyone out there need a boost? Well, maybe, but probably not in the sense that I mean. Yesterday started the "boost" phase of my radiation. Apparently, radiation likes oxygen and works best with oxygenated tissue. Scar tissue does not have much oxygen in it. So, the last 7 treatments of radiation is called a "boost" and they direct concentrated radiation specifically to the incision site. Cancer is most likely to recur near where it was before, and I can attest to the truth of that first hand. So they want to be sure that area gets good and irradiated also. While they are radiating the whole breast area and lymph nodes, the scar area doesn't absorb as much because it's not as oxygenated. So they zap the scar area with some extra super gamma rays (probably not gamma rays, but that sounds cool) to bring the dose of radiation up to what the rest of the "field" (another term I've learned during all this) has already gotten. So I am in day 2 of my boost and will be done with radiation NEXT WEEK! July 26th to be exact. Seems crazy that it's already almost done. The boost is kind of weird because they made a mold to support my upper body so that I lie in this wonky position and the machine has an extra gizmo on it and it comes REALLY CLOSE on my chest. The funny thing is, with all this high tech wizardry they have, they still draw on my chest every day with a sharpie to outline the field where they want to send the radiation so it's the same each time. The field is projected from the machine and they trace it. Really, a hand-drawn sharpie outline is guiding this whole massive machine that is sending radiation into my chest?? I know it's way more technical than that, but I get a chuckle out of the sharpie.

The other news is that I don't need a PET scan right away. I thought they would want to do that at the end of radiation to see how it worked, see what's happening (or NOT happening) in my liver, and to check if anything else is cooking but the oncologist today said no, not for 3-4 months. I was a little disconcerted by that at first but he explained it based on two reasons. One is we have to give the Femara (hormone suppressant) time to work and I've only been on it for a couple of months. Two is that radiation is a gift that keeps on giving. I thought when it was done it was done but he said it continues to work for months. Radiation damages the DNA in the cancer cells so when they go to divide they can't and then they die (yay!). Your cells don't all divide all at the same time so over the course of treatment and a few months after that, as the cells try to divide, they won't be able to and they'll croak. So that made sense and made me feel better about waiting for the PET scan. Gotta give the Femara some time to work on the whole system and give any remaining c-cells time to try and divide in my chest only to be denied by the effects of the radiation. I'll see him once a month and he said at each visit we'll re-evaluate the timing of the PET but most likely not for a few months. So, nothing else to do but relax and enjoy a few treatment-free months!!! I'll keep up with all my supplements and meditation and the things I can do to take care of me, but it will be nice to be sort of normal for awhile too and not going in for daily or weekly treatments other than keeping up with my physical therapy. Oh physical therapy......

I love PTs. They are magical and miracle workers. They don't mind touching people (I could never be a PT or massage therapist or anything like that!!) and they know just where to poke and prod and stretch to make a person feel better. They cause momentary agony too, but all for a good cause! She makes me hurt, but it's amazing how right after poking, digging, or pushing on an area I can move my arm without any pain or pulling. Amazing! The effects aren't lasting super long since radiation causes all those muscles to constrict right back up again but I can't imagine not doing PT. Once radiation is over, we should see more lasting progress on the left side. But the progress even with radiation has been amazing.  So hug a PT if you see one. They are awesome.

On a non-c note, Emily came back from France last week and it's been wonderful to have her home. She left again today for Chicago, but will be back again on the 28th, with two Frenchmen in tow. Her boyfriend and his friend will be spending some time with us before they move on to LA. So I am looking forward to hosting them, enjoying the rest of my summer, getting back to work, and just getting back to life. I've come a long way these last few months.

I'm shrinking.......

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 ;)

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!

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 :)

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!

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!

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.

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.

Surgery!

Finally. Surgery time! I have wanted this thing off since January so I am eager to see it go. They call it the "primary source of disease" but I call it the mothership. Once the mothership is gone, I can really focus in on the remaining areas of disease and direct ALL my energies to those spots. So this is just a short blog to let you all know surgery is scheduled for tomorrow. I have had what I consider 2 good omens on this. First when I called on Friday to get on  the surgical schedule they said they didn't have an opening til June 2 and my stomach about fell to the floor. I can't wait that long. So, I asked the scheduler if it was possible there was anything sooner and she looked again and found May 17, which was the very next time the surgeon was operating. Apparently it wasn't a day she was originally supposed to be working so the scheduler didn't look at it at first. But she is doing surgery that day and could add me in. So it was set for 12:30. Today they called and asked if I could come in earlier and have the surgery at 8am. So it's only 4 1/2 hours sooner, but still feels like a good omen to me. Wish me luck and healing tomorrow and I'll be back to writing when I can.

More fighting to come

Well, I might as well get this out there. I had a PET scan and an MRI last Monday and met with the doctor on Thursday for results. Unfortunately, not the good news we'd hoped for. The breast showed a little change. The liver also showed a little change, which confirms it is wayward breast cancer. But a new spot on my spine showed up. Very disheartening to think it could still spread while I was on chemo and I am very disappointed with how the chemo went. To feel like crap for 3 1/2 months with very little change, well I am sure you can imagine. So the next step is still the surgery to get the mothership, as I like to call it, finally off my body. Then, they'll work on the spot on my spine. They'll give me a bone strengthener and radiation. It's 95% effective so that's encouraging. My liver will have to wait a little longer and we're not sure what to do about that. They may have to try and manage it more medically as I may not be a candidate for radiation if they irradiate my back I guess. I don't know. It's all very confusing and discouraging. But I am really trying hard to keep focused on my wellness and I am exploring other additional things I can do to support the traditional treatment. Since chemo didn't work so hot for me this time, I feel like it can't hurt to try other things! I have already been doing Reiki since this started and my Reiki therapist has been an angel with her support and resources. She suggested I try turmeric and green tea extract so after reading up on both, those are now part of my daily regimen. I've been doing a lot of guided meditation focused on healing. I am also looking at other things I can do to take charge of my treatment and my body. So I've got more of a fight ahead of me than I was hoping for but I have amazing family and friends and a tremendous circle of support that humbles me every day. So one step at a time, we'll move forward. Please don't dwell in dark places when you think of me, think positively about my wellness. The energy from positive thinking and prayer is so powerful, but dark thinking can be just as impactful so let's all focus on wellness!

I'm a bad blogger....

Wow...it's been over 2 months since I last blogged. Sorry about that! Nothing good nor bad about it, just didn't do it. I have to admit though that when I am feeling bad I don't want to blog and when I am feeling good I don't like to dwell on having cancer, again.  So that's my excuse.

I'm not quite sure how to catch up. My tolerance for the chemo has varied. I can usually always count on a lousy Saturday and Sunday following an infusion (always on a Thursday) but some rounds went better, and some were way worse. The last part of Round 4 was a bitch. It hit me right away and lasted 4 days. In hindsight maybe I had a bug along with it. But this first part of Round 5 hasn't been too bad. Although, let me clarify that...because sometimes I think when I say it's not too bad, people think, well, that it's not too bad and that I feel ok. My frame of reference has changed. I haven't felt "ok" on the old scale in months except for a few bright spots here and there. We've never quite banished the nausea, and I'm just tired and wiped out a lot. My endurance is poor and I get tired. I think I do generally ok and am pretty functional most of the time, it just takes more effort and more downtime to recoup. I'm not sure what ok on my new scale is compared to my old scale...but it's like a good day for me is feeling 80% of how I used to feel. Sometimes 90%. Now when I was on the beach last week I would up that to 100%!  We took a short trip to Capitola California, about midway between Monterey and San Francisco, and it was a wonderful trip. You can't deny the restorative properties of the ocean!

As for my treatment, it's hard to say. Around Round 3 we were looking at my cancer markers. Keep in mind these cancer markers didn't even detect I had cancer til my first day of chemo. But looking back, it looks like one marker was starting to creep up last spring. I was being checked every 6 months and everything was honky-dory but in April of last year, it started to creep up a smidge. Then, another little smidge up in October at my next follow up. But still well within the normal range and even at the low end. Then even in January when I went in on my own saying something is WRONG and everyone agreed, it was still in the freakin' normal range. Only on my first day of chemo did that marker finally step over into the bad range. The other marker they use didn't show a thing. So, the doc decided we'd try this other marker, a circulating assay test, that was supposed to be more sensitive to recurrence. So we did that at the start of chemo after all my tests and guess what...it said I have 0 cancer. Um riiiight, and pigs can fly. Apparently this marker is more sensitive but only works for 70% of the people. Clearly it did not work for me. So I have one of three markers that sort of works for me. The doctor has been tracking that and it was going down, then up, then whatever and basically we've reached the end of the line for chemo. I was scheduled for 6 rounds, but he said all along that if I started to plateau we'd skip the rest and move to surgery. So that's where I am at now. I'll finish round 5 on Thursday, then a round of new tests the week of May 7 (MRI, PET Scan, Plastic surgery consult) and meet with the oncologist on May 10 to go over the results. Surgery will most likely be mid-May instead of June. While I am relieved to be almost done with chemo, I wish it had done more. It's hard not to feel a little disappointed and worried that I have "plateaued." I also dread the testing. Well, I dread the anxiety of waiting for results and the potential for it not to be good news. What if nothing has changed? What if it's worse or has spread more? It's hard not to think about stuff like this. And I worry about the markers...so let's say I get through all this...how am I monitored in the future if the markers aren't effective for me?  So many questions. But I have a new mantra. Someone posted it on Facebook (see there is value to Facebook) and it's something about if you worry about something before it happens you are living it twice, and it's enough just to live it once if it actually happens. It was said much more eloquently than that, but chemo brain has taken hold and my memory sucks. But I like the sentiment. Why live something awful twice? It is what it is (another favorite mantra) and if it's bad, why waste time now living it by letting it consume my thoughts and rev up my anxiety? Not that it's easy, but it's important that I do.

Lastly, I just need to thank everyone. I saw that this blog has been read 807 times. Holy cow! I don't think I even know 807 people!!  And that's nothing compared to all the kind words, hugs, cards, emails, prayers, and support I get everyday from those near and far. I will never be able to put into words how much you all mean to me and how humbled I am by your kindness. Please know that your words and gestures and support mean so much and I think have been a great boost to my recovery!

Well I think that's all for now and I promise to be a better blogger!

Oy my aching head

Hi there. Sorry it's been awhile since my last post. Today is the first day in 2 weeks I haven't had to pound some advil or tylenol to try and alleviate a chronic headache I've been having since treatment started. Advil took the edge off, sort of, but it never really went away. I did find a miracle tho, Excedrine Migraine. Wow...who needs Red Bull when this stuff is around. I made a mistake the first night taking it around 8pm. It's acetaminophen, aspirin, and 65 mg of caffeine. That night, I couldn't fall asleep but I didn't care....my headache was gone and in my heightened state of alertness I solved all the world's problems!!! Too bad I can't remember any of my awesome solutions. Yesterday I tried just some extra-strenght Tylenol and it did nothing for the headache so the caffeine must be the secret ingredient! Good stuff. But, best taken in the morning, not the evening!

So this week I felt pretty punky til around Wednesday-Thursday which was depressing because I was hoping I would rebound faster. We are switching my nausea meds to something different so at my next dose, I'll see if it works better. The nausea and the chronic headache have been the biggies. Other side effects have been changes in how things taste, some rashy spots, a mouth sore or two, a little tummy trouble here and there, some vision fluctuations, fatigue, chronic cold symptoms, and a brief round of neuropathy. Or at least I think that's what it was. After my first dose, I noticed my typing was really bad and when I would unscrew lids they'd fly to the floor and I was dropping little things like pens and such. Weird. Neuropathy causes changes in the sensations of your extremities. Although my fingers didn't actually feel any different, I sure was dropping everything there for awhile! Thankfully that seems better now, or maybe I've just accommodated! The one side effect I really liked last time hasn't set in yet. Last time, my skin really cleared up and I am looking forward to that again! What's weird is I can already see where the tumor is shrinking. Kind of gratifying to see changes.

This was an "off" week so no infusion on Thursday. I have to say I've been enjoying my weekend! While I still don't feel 100% I at least feel functional and able to do things and get out and about! We gave the puppies baths today and took them on their first walk today. Both of those are really short activities with Dachshunds!! Nothing like bathing or walking a labrador!

My next infusion day is Thursday Feb 23....see you then :)

Round One --- down!

Sorry I am a little late on this one. I had part one of Round 1 last week and was looking forward to a reduced dose this past Thursday for part two. Well, there must have been a miscommunication somewhere along the line (of course the doc says it wasn't him..funny how docs never make mistakes!) but my regimen is actually both drugs, 8 days apart, then a week off. Then we do it all again for the next round. So hearing I was to have both drugs both times was a bit of a bummer. Yes I guess it's easier to tolerate, but I'm more of at do it all at once kind of gal. My mom used to tease me growing up because on house-cleaning day I would just go-go-go. No breaks, let's do this and get it done! Just seems to be my attitude towards everything I guess. I'd much rather feel like 100% crap for a few days and then feel pretty good for the next 2 1/2 weeks than feel like 50% for 10 days, then a week of good. I know my math is off here (story of my life with math ha ha!) but you get the point. I'd rather take it and be done with it than string it out. But it's not up to me and if this is the best way to beat this I'm all for it. Just kind of lousy to feel at half speed with the road still long ahead of me.

So, the actual session went ok on Thursday. My good friend Sharon visited me and that was awesome. I tried to convince Bruce to stay home thinking it was just going to be a quick hour but he would hear none of that and I'm so glad he came since I ended up being there almost 4 hours. The Gemzar was a pain this time, literally. Made my arm hurt like when you hit your funny bone. So they slowed the drip way down and that helped. My counts were way down too. Nothing like being handed a piece a paper with numbers all over it with the tags "critically low" or "low." Apparently, the ones that were critically low they didn't care about...really? You sure about that? Sounds kinda serious to me. But no, there were just two on there that were a smidge low but low enough at this point in my treatment to require a boost. So I'm on the Neulasta. You have to go back the next day to get the shot, but it is a miracle drug that boosts your bone marrow and keeps your immune system up. I had it last time and it was amazing...I am hoping it works just as well this time. It can cause bone pain, but so far not a huge issue which has been a relief.

Yesterday, the day after chemo, I felt freakin' great. Very strange. I did crash a little later and take a big nap, but I was feeling pretty dang good. Today not so much but it does seem to be getting better this evening and has already been better than last weekend. So maybe this spreading out won't be so bad. It's just so hard to predict when I'm going to feel ok and when I'm going to feel lousy. But with 10 treatments still ahead, I'll have lots of opportunities to figure it out. And with those being full sessions each time....more opportunities for visitors!

When do I get to wake up?

Not to be too maudlin, but I was thinking recently about the fine line between being okay, and not being okay. How one day you're fine and the next day you're not. How even one moment makes a difference. It could be anything, illness, accident, trauma, ... anything. It got me thinking about our families too, the ones we see at work. They come in with a little one who they think is bright and funny and maybe a little quirky and leave with a child with autism. Or maybe they've come because their child hasn't quite mastered reading, and they leave with a child with a learning disability. The power of that moment to change the course of someone's life and dreams has always driven my practice but nothing hits it home quite like getting a diagnosis yourself. It makes me think about how we go through our lives each day, assuming the next day will be like the one before. We have our routines and our expectations for what each day will bring. We have to I guess, the unpredictability of all the options that could befall us on any one day is overwhelming. Like a bad dream where things just keep going wrong. Which begs the simple fix....when do I get to wake up from this one?

Round One, Day 1

So I am still trying to get caught up with the blog thing...forgive me for not operating in real time yet! But I'm close! Last Thursday we finally got this party started (yes, I'm quoting Pink. I admit it. I like Pink. Every time I say that I hear her singing in my head and it makes me smile. Oh the little things..... ;) Anyway, I digress. So we got it kicked off, finally! The infusion wasn't bad at all; it rarely is as long as you're not allergic to anything (FLASHBACK: I was alllergic to one of my meds last time and it was not fun...friends who were visiting me at the time can attest to that). And actually, the weekend hasn't been too bad. That's not to say I am feeling great. But certainly better than the last time around. This time, I am getting Gemzar and Carbo. Those are shortened names for some 87-syllable long compounds, but we're all friends here so we use nicknames. The Gemzar is quick, like 30 minutes to infuse. It's crazy. The Carbo takes an hour. So all told after they check my blood for everything, hook me up, give me saline and some prep meds, the whole infusion takes about 3 hours. That is lightening fast in the chemo world. On day 8 of each round, I go back in and get the Gemzar again for a whopping one hour infusion. So it's 6 rounds, but really 12 infusions. That's okay. I'd go every day if they told me. The Gemzar will let me keep my hair, or at least most of it. They say it will thin but anyone who doesn't know me won't have a clue. So that's pretty cool. I don't care about losing the hair (well maybe I do a little) but it's more the sad puppy eyes I get from people who see me. I also work with small children and their parents who come to me in an already somewhat vulnerable state....I don't need them freaking out more because of the bald lady. Last time I wore a wig for all my work appointments, but man those things are sooooo uncomfortable. Since my doses are spread out, I won't need the Neulasta that I had last time. Neulasta is a miracle drug and kept my blood counts up and my immune system strong. Love it. But hate it too...it causes a LOT of bone pain and that also with the muscle and joint pain from the Taxotere last time, I was a much more miserable puppy than I am now. This time I've had some nausea, headaches, bad tummy, and SUPER tired. They said that is one of the major side effects of this regimen: fatigue. I think I've slept 12-15 hours a day this weekend, plus some naps ha ha! But sadly friends, my taste for coffee has already started to go. Woe is me. Starbucks is my lifeline and now, well, it tastes kind of oogy. Well that's pretty much it for this weekend. Thanks so much to the friends who have sent me messages, or brought me comforts, treats, meals, or just stopped by for a visit. You all rock and I would be lost without you and my family. My husband is my champion and goes everywhere with me and my daughters fill me with love. And I can't forget the puppies and PennyCat!

A brief recap, well maybe not so brief....

So I came up with a title! Yay. Maybe not the best one but kind of how I feel about this. What can you do.....you just have to do it again.

I thought a little recap might be in order here but then it's full steam ahead. I don't like to dwell in what I call my "gloom bubble." It was not a fun place to be and I don't want to go back. But I think it's an important part of this whole process. So, as you know from Post #1, I discovered some nastiness on New's Year's Eve Day...here's the run down from there:

New Year's Eve Day 12/31: As I look in the mirror "Yikes! That can't be right!" and I call the doctor but it's SATURDAY and NEW YEAR's EVE so I sit at home wondering what the heck is lurking in my breast. Is it inflammatory breast cancer?? Of course that's where my brain goes. Google that one...it's not good. So Sunday plods along, then Monday which of course is a freakin' holiday for everyone. The finally on Tuesday they call and set me up with an appointment for Wednesday. So at this point, about 5 days of freaking out has transpired.

Wednesday 1/4: The doc agrees that indeed things do not look right and sends me off for an ultrasound. Now, you know things are going badly in the ultrasound when the tech asks you "So did you ever have any cancer over HERE?" which of course was NOT where my cancer was before. Before I can say "Oh crap" to myself she leaves the room and comes back the radiologist who just "wants to take a look for herself" ...another bad sign. Well there seems to be a new "spot" so I'm set up with a biopsy on Friday.

Friday 1/6: Breast biopsy day. Breast biopsies are not fun. Not fun at all. Enough said. We'll call you Monday and let you know the results. Monday rolls by, Tuesday rolls by... no call from the doc. I did get a voicemail from the biopsy nurse asking how I was feeling about everything and how was I healing.

Wednesday 1/11, is my appt with the oncologist and he asks me "So how are you feeling about the results?" What freakin' results??? Why does everyone know about my results but me??? An oversight apparently as to who was supposed to call me. Thanks. But the results are what I expected. Breast cancer, estrogen positive, different location but same breast but a recurrence. Looks to be 2 cm. I'll need a mastectomy for sure this time, then likely chemo since this seems to have come out of nowhere. I've already had that breast radiated so I can't do that again. It's up to me if I want to do a bilateral or single mastectomy and it's my call on reconstruction, which they can do simultaneously. Wow...my head is swimming. Next steps: Breast MRI, meeting with surgeon, and a PET scan.

Thursday 1/12: Breast MRI day. Always a good time. Lie on the table on your tummy with each boob hanging out a cut-out opening like a milking machine. The best part is when the tech reaches in under there to "position" you properly. Then the clanging from hell starts. But all in all not a bad thing as far as tests go.

Friday 1/13: The MRI lady calls and says it all went well. They saw the cancer where they were expecting, other breast looks fine, lymph nodes look fine, doesn't look attached to the chest wall so all in all, no surprises. Whew. That's a relief. But wait a tic....later that night the oncologist calls (ok so NOW he calls) and tells me the tumor is actually 7 cm (WTF??), we can't rule out the chest wall being an issue, and one lymph node appears to be "affected." Huh? How do we go from 2 cm to 7 f'ing cm??? So it's looking like chemo first to shrink the tumor but we'll see what the surgeon says on Tuesday. So from feeling pretty good to feeling pretty crappy about it all again. My niece and her fiance were visiting that night to give support (and meet our new puppies) but I had to go upstairs for a nice little cry for a minute.

Tuesday 1/17: Visit with the surgeon. Oh how I love my surgeon. She is amazing. She knows everything and has the most calming and confident presence. The first thing she said was "Oh I can cut that out." She had no concerns about the size or location of tumor. She also said she thought it was just 2 cm but that there was probably a bunch of DCIS in there that was clouding the area up making it look bigger than it was. I also hadn't gotten a straight answer from anyone as to whether it could be inflammatory breast cancer and she matter of factly said "No, you don't have all the skin changes. I just think the tumor is pulling up over here and causing the disfiguring." Oh god I love this woman. She then told me how chemo first could be a really good thing, not to shrink the tumor but to give me time to decide if I wanted the bilateral and to line up reconstruction if I was interested in that. She understood my desire to just get it done, but also wanted to be sure that I had the time I needed to think it through. So by the end of that visit, I was feeling pretty good again thinking I would do chemo first, then use that time to decide 1 or 2 boobs off and meet with plastic surgeons. It's been quite a roller coaster up to this point....good news, bad news, good news, bad news....Later that day I had the PET scan. Pretty routine. Drink some nasty crap, go outside and sit in a semi-trailer perfectly still for an hour then get scanned by the nuclear machine. I've had one before, and it went well. The PET scan works by lighting up parts of your body that are consuming sugar at a faster than normal rate. All cells like sugar, but cancer cells REALLY like sugar. So when they find one, they call it a "hot spot."

Wednesday 1/18: Back at the oncologist for the plan. He starts going over all the test results, and I share with him what the surgeon has told me. He gets to the PET scan. Yes the boob lights up, we expected that. Except this time, so does a lymph node, and there are 3 "hot spots" in my liver. What? Umm...did you say liver? Does this mean this shit has spread already????? Could be benign, could be a hematoma...did you have anything on your liver last time? Uh, no. He digs up my old records, nothing there on the liver 3 years ago. Okay, well, they are taking up sugar suggesting they are most likely the same cancer as in your breast. So we'll need to biopsy your liver. We'll definitely start with chemo first, then the surgery, and the some radiation to your liver. He went on about this but honestly I had stop processing way before this point. I had entered what I later came to call the "Gloom Bubble." I won't dwell on the Gloom Bubble, I spent enough time in there. A solid 5 days or so. Wednesday night when we got home I went straight to my room. I couldn't tolerate light, sounds, nothing. Literally under my blanket I went and that's where I stayed the whole night. I tried to do better the next day and the days after but it was such an effort to try and seem normal. So much energy spent trying to fight off the gloom that I was exhausted at the end of each day and sleep was not a problem. I was gloomy enough thinking that getting this shit twice can't bode well for one's lifespan in general but to hear it had most likely spread was devastating. Add to that putting my daughter back on a plan to France for 6 months and I was one sad puppy. The Gloom Bubble was an interesting phenomenon, I had no control going in, and just as strangely I emerged sort of spontaneously. Just started feeling better on of all days, the day of my liver biopsy.

Monday 1/23: They called me Thursday asking if I could come in the next day for an abdominal CT. I asked what for and the doc said to get a better picture of how to get the biopsy done...not for any other reason. Ok....but then they said oh wait, we'll just do it all on Monday. So Monday rolls around and off to SkyRidge Bruce and I go. After an abdominal CT and an ultrasound and 3 hours of waiting, they said they couldn't do the biopsy. One spot is on the high point of my liver, just below my lung so to send a big honking needle into my lung and out the other side to get at this thing would be risky. Ok, so let's not do that. The other spot is tiny and between two major vessels...again, risk level not good. The third spot is so tiny it doesn't even show up on the ultrasound. So no biopsy for me. Later the doc said if we'll do the chemo and if the spots go away, we can assume it was the same cancer and follow up with radiation. If the spots don't change, we can assume they are benign. If the spots grow, that would mean they were something else and we'd maybe have more to biopsy. I am hoping for door #1 or 2!

Tuesday 1/24: Chemo teaching day. Thankfully they give me the short version and the gawd-awful video has literally burned up so I am at least spared that again.

Thursday 1/26: Day One of Chemo.....well not so fast there missy. Turns out my doc changed my regimen Tuesday afternoon and the insurance company has not had time to review and approve it. So there we are in the infusion room, but a no go on the chemo. :( Boo hiss. On the plus side, the new regimen will be spread out over time and be easier to tolerate and I won't lose my hair, but on the negative side we can't start it til next week! But I'm actually ok with this. Annoyed, but so grateful that the set back hasn't derailed me. I am handling it. I am not sliding back into the Gloom Bubble. We will get this done.

Getting started

So I've been struggling with what to call this blog......"Pam's Journey?" No, that sounds kind of fun and this isn't a fun journey by any means. "Return of the Big C?" Naw, that doesn't sound good either. I don't want a title that's too maudlin, or something that sounds flippant. It also feels like giving it too much power by giving it a title. So, The Blog With No Name it is. Maybe as we go along I'll become more inspired, but for now, forgive me for my lack of creativity!

To get started, I need to go back in time a bit....to a sunny day in June 2008 when I was first diagnosed with breast cancer. Pretty devastating, but more in a surreal way. My tumor was small, estrogen positive, and hadn't spread. So I had a lumpectomy, a re-excision to get a better margin a week later, then accelerated radiation as part of a clinical trial and 4 rounds of chemo. It was small, but a fast grower (grade 3), so the doc opted to be aggressive which was fine with me and do chemo. Once I had my lumpectomy, my cancer was gone and the radiation and chemo were to keep it from coming back. I was also on Tamoxifen, another preventative measure. After my treatment, I made several lifestyle changes with the support of my family. The doctor said the only things related to cancer prevention based on research were eating whole grains, avoiding processed foods, eating 7-10 servings of fruits and vegetables a day, and keeping my weight down with exercise. So I did all those things. I started running again, and ate more fruits and veggies than in my whole life before probably! I ate whole grains...even the gawd-awful whole wheat pasta. Everything's been going really well and at my last check up in October, including bloodwork and a mammogram, all was good. But, for whatever reason, on New Year's Eve day I took a good look at the affected breast in the mirror and was very disturbed by the surface changes. That started a whole new round of tests and the news that the cancer was back. This time it wasn't so surreal, just damn scary.