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 :)