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