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!