Top 10 Ways the Hospital is not like Arizona

So as many of you know, I landed in the hospital this week when I was supposed to be on a college visit trip to Arizona with Sarah. I had a fever Monday night and when you are in chemo, they take fevers very seriously and sent me to the ER to take blood and see if I had an infection. I was tested up one side and down the other, and thankfully no apparent infection, no strep, no influenza, no pneumonia, etc. My temp dropped quickly but my counts were really low so they kept me and put me on antibiotics. My counts got better all across the board except I was anemic so then they did a blood transfusion. I guess I have been loitering around the "critical threshold" for anemia for quite some time and finally crossed over into the needs a transfusion range. Not sure why we weren't treating the anemia some other way all along, but who knows. Explains why I've been so tired these past several weeks (among other things!). The culprit for my fever is likely the double dose of Taxol they gave me last Thursday to carry me through my trip. Sounded like a good idea at the time but dropped my counts to the cellar and gave me a "neutropenic fever." Fancy for "chemo kicked your ass and now you have a  fever." They finally let me out on Thursday.

So as I was sitting in the hospital, I started thinking how different my week was compared to what should have been, sitting by a pool, sipping something fruity, visiting a college campus, and having fun with my daughter and I came up with this list....

Top 10 Ways the Hospital is NOT like a trip to Arizona

• 10. The hospital gown just doesn't cut it as a cute bathing suit cover up.
• 9. While room service is nice, ordering super bland food is not as fun as eating authentic and delicious Mexican food.
• 8. Being awoken at night by strangers wanting to take my vitals rather than being awoken at night by drunken spring breakers (ok so maybe this one is a toss up).
• 7. No shopping.
• 6. No opportunities to make endless Scum Devil jokes.
• 5. No alcohol....they have burritos and quesadillas on the menu at the hospital, you think adding a margarita wouldn't be so hard.
• 4. Strolling around the 5th floor is not the same as strolling through Old Scottsdale or taking a campus tour.
• 3. The view from the window DID NOT include any palm trees.
• 2. Although the blood transfusion pinked up my skin (a nice improvement from the yellow shade I've been sporting) I would have much preferred to get a tan the old-fashioned way by baking in the sun.
• 1. No pool!

So we'll see what the next few weeks bring and if we can squeeze a quick trip to Arizona in before Sarah has to make her decision and commit to a school. I think I've earned some pool time.

Out with Sponge Bob!

Hello ye intrepid readers. I feel the need to blog again because there have been some new developments. I have been doing well on the Erubulin (Sponge Bob) and my markers have been going down so by all indices, it looked like it was working. Well, it has been working, just not well enough on my liver. Sunday the 17th I began itching like a dog hosting a flea carnival. Very intense on my palms and the soles of my feet. I am surprised I have any skin left. Then itching all over. Then the tell-tale and dreaded orange pee. So on Monday I went in for some hydration and while it made me feel better, it did not alleviate any symptoms. Gradually I started to getting more and more yellow. Not a good sign. On Thursday the 21st I went in for treatment and my bilirubin was high, a 7! When I tanked last Jan-Feb, I was at 8. So not good, but the thought was the Erubulin would kick my liver back in to shape like it did before. Well, it didn't. I went in Monday the 25th to get a blood test to check my counts (which were lovely by the way) and they didn't like how much more yellow I was which started the day I like to refer to as Cluster F*** Monday. Hurry up and wait was the motto of the day. I felt horrible already with my lack of bile drainage and waiting was interminable. They also said no eating or drinking because we're going to have to something procedurally and you can't have anything in your tummy. So an already nauseous person denied food. That was pleasant.

Cluster F*** Monday, or CFM, started with waiting for my blood test to be processed. You would think "Stat Read" means do this super fast or I'll fire your lame ass, but it doesn't. It means do it minutely faster than you'd run any other blood test but we all get to run around and say "Stat" now and that's fun. Finally got the results of that and my bili was at 12! A new all time record for me! So they decided I probably needed a stent to open my bile duct and we'd confirm that with an ultrasound. This is around noon by now. The ultrasound will be at 2 with a 1:30 check in. So, more waiting.

I get the ultrasound and they had said stay there and the doc will do the procedure right away. Well no, he sends me back to the Cancer Center. Turns out he doesn't want to do the procedure and wants a GI doc involved. Dr Radiologist thinks I need a different procedure that would require admittance to the hospital. So my docs were all working on that. They found a GI, a "super smart" one by their description, and he's not so sure. He wants another test. An MRI. So that get's scheduled for 4:15. The results of that will tell us if I can do the stent or if I have to be admitted for the in-patient procedure. Either way, word on the street has it that this is a serious and semi emergency situation and maybe they'll send me through the ER since it's getting late. Okay fine. You really sure I can't just go home and start this over tomorrow I plead? I've been here since 10am and it's now 4 with no food or drink?? No, this is serious and you must stay so we can fix you. Ok fine. My MRI runs late (no surprise) and I get out of it around 5:20 or so. It's another "Stat Read" and we know what that means.  Now where do I go? Back to the Cancer Center. It's locked up tight as a drum and we are all banging on windows. Was I approaching tears? No. Was I approaching major destruction of property? Yes. I could put that nice rock through this window.......ok time to leave. Back to Radiology. There a nice lady helped us and I got the on-call GI doc who said if I didn't have a fever I was ok to go home and everything else would be sorted out the next day. So home we went.

Super Smart GI calls me at home later that evening and he was very nice. We can do the outpatient stent (yay!) but it looks like part of a tumor is blocking the duct (boo!!!). I had the stent put in on Tuesday and a lovely procedure it was. *Note the heavy sarcasm.  It was actually pretty miserable and lots of pain after. I am better today thank goodness. But Percoset was my friend there for a few days. I'll have to do it again in 4-6 weeks as I have a plastic stent right now that will deteriorate and I need a metal one put in.  The metal one is a special order, they don't keep them in stock. And did I mention Super Smart GI is like 12 years old? I didn't meet him til the day of the procedure and I'm not sure he's shaving yet, but he seems confident and capable.

So today was a chemo day. Dr Onc says the Erubulin is working on my other systems, but not on my liver which is not good news. The liver seems to have worsened so we started a new chemo drug today, Taxol. I will get it weekly every 3 weeks, then a week off and we'll see how I do. No scans for awhile since we just got the MRI and it showed more gunk in my liver. So it sucks that Sponge Bob did not do the trick for my liver.  Today my bili is down to 4! Should be below one but we are headed in the right direction and that's a big drop! It helps to have your bile drain, I guess mine was completely plugged, nothing coming out til they put the stent in. As we go through drugs. it gets scarier and scarier when they don't work but I have to just focus on the day, not the long-term picture. Something will work. And I do feel much better today and less yellow :)

Well, crapamoley times 10

Wow, this blog is really becoming a bummer. Sorry about that. But it seems like I am still knee-deep in the battle and have been put back into chemo. Some of you may have known I was feeling pretty poorly these last 2 weeks and even missed all of work last week, and parts the week before which is not like me. We were thinking it was a combination of the new trial medicine they started me on on Jan 17 and a couple of SSRIs for antidepression they were trying with me too (go figure that I might have been feeling a little depressed about all this....). They've also spent the month of January getting the level of Faslodex up to fighting speed. So a lot going on in my poor body this past month. But turns out it wasn't any of those things. On Jan 31 they took me off the two new meds (the BK and the SSRI) to see if that would make my body happy but when I went in last Thursday, Feb 7, to get my blood drawn to see if my system was perking up they didn't like how I looked so they whisked me into ultrasound. Lo and behold my once happy liver was happy no more. Seriously, it's had 2 spots hanging out in there but has been happy as a clam for almost a year.....but for whatever reason it's not happy now. In fact, it was so unhappy that my doctor got all riled up and started me on chemo right then and there challenging the insurance Gods to even try to not cover it. Typically, you have to wait 3-5 business days to get approval for chemo through insurance but Rambo-doc was not waiting which was fine by me. So on Thursday I started chemo to beat back the breast cancer that is now blowing up in my liver.

The chemo I am on is just one and it's derived from a South Pacific sea sponge so we've affectionately named it Sponge Bob and it's crazy stuff. It's like an inch of medicine injected through the iv so no more sitting for hours and hours getting my infusions. About 45 minutes is all it should take. I am getting a port tomorrow so no more poking me with needles!!!! Yay!!!!!  I am on a two-week on, one week off schedule meaning I'll get it once a week for 2 weeks, then get a week off, then start again. I don't know how many cycles. He didn't say and I guess it will depend on how well it whips my liver back into shape. He's very optimistic we will beat this down again and then look again at maintenance and to think of this as a flare up. Helluva a flare up if you ask me but whatever. But since it's come out of no where and I deteriorated so quickly, we need to be aggressive. I am all about being aggressive so I am excited about this. I am not excited about losing my hair. That will be a bummer. But it gave Bruce the chance of his lifetime to fulfill his fantasy to cut hair. Together he and Emily created a short bob for me that I think turned out quite cute. Just so you know, cutting our own hair prior to chemo seems to run in the Parker family. My dad cut his though only to find out he wasn't going to lose it....and I use the term "cut" loosely, butchered would be a better descriptor! I had mine cut professionally the first time but figured what the heck this time, let's have some fun with it. (But you can be sure I had the number to Great Clips close at hand!)

So blog and facebook friends there you have it. Back in the saddle for round 3. You know they say third time is the charm and let's hope they know what the hell they are talking about! This is getting kinda old. But I feel better today than yesterday and who knows what's waiting for me tomorrow (well...dumb question I am getting a port tomorrow but you know what I mean!)

Love and hugs to all
Pam

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 :)