Terrible, Horrible, No Good, Very Bad

This is both the title of my favorite children's book by Judith Viorst and how I would like to describe my last few days.

I can not dwell because I'm so tired and in so much stomach distress right now. I just want to check in.

My number dropped again. It was 10 at Halloween. The hcg is now 5.6 - that is spectacular news is no lost on me. In fact it's the only thing that is helping to keep me focused. Most of my other blood work was too low for chemo this Wednesday and I was no at all disappointed.

For three days I literally could not get out of the bed. On day I did, I went to sit in a chair next to Chris. The next thing I know, Chris is leaning over me checking my pulse at my throat. I said, "What happened?" He said, "Did you have a nice sleep?" I legitimately said, "Yes. What was I talking about." "Nothing," he said, "you eyes just up and rolled into the back of your head." These are not good days.

My platelets are down to 11, I've had fluids from Kristin 3 times this week - great story there.

And at 32 years old, I officially lost control of my bowels yesterday morning.  - also a terrible, yet funny and totally embarrassing story there.

Like I said, These are not good days.

Katie took two days of work and drove 5 five hours on a moments notice to get here. These things make all the difference. I think I've done cancer pretty-perky so far. I am much less perky right now. Send perky vibes, like Katie Couric perky.

What Chemo? I Hosted Halloween

Cancer has cancelled more than it's fair share of parties in the last four years. The first was the Gardner's Caroling Party, a decades old tradition that Chris and I missed December 2008. It was extra sad because we were gifted the Velvet Elvis that year and I was too sick to be at the party to receive the great Masterpiece. That's when cancer really starts to piss me off.

The latest party cancer tried to tackle away from me was Halloween. But thanks to some spectacular friends, I was able to enjoy a Halloween Celebration unlike any other. And no offense to all those involved, I hope we never have to have one like that again.

It all started with this:

... a dear friend with a creative gift that she had shipped overnight so it would arrive in time!

This is Deb Smithgall and I with a Cosmopolitan Glass Costume!! It's pink and sparkly and has a lemon rind garnish!! The Smithgall's have always been close to my heart. From the times I interviewed Charlie when he was Mayor, to the day he proclaimed my birthday a Special Day of Recognition in Lancaster City. And then, of course, we can't forget that he set Chris and I up!! Match maker, match maker! Deb has been sending the funniest, cutest cards ... promising hugs and well wishes. They've really gone above and beyond already ... and then this! The costume of the year!!

So I spent Halloween in the hospital. Checked in at 9 am. They accessed my port with no problem this time, so that helps keep my stress level low. The amount of time it takes to get the chemo delivered to the hospital is another problem entirely. Hours, hours, hours. We have yet to figure out why Kristin can do it in 3 minutes and it takes LGH 6 - count 'em; 6 - hours to get the poison up to my room.

But, don't fret. With a Cosmo Costume all is well. The day-shift girls heard I had a costume and knew I was going to pair it with my shiny Louboutins, so I promised to don the outfit before their shift ended. So I was all dolled up with no where to go by 2:30pm. Once the girls oohed and ahhed and laughed with me (they are so fun!) I would lay down in the bed and the wire hoop at the bottom of the "glass" would stick straight up. Had to make sure it wasn't a free show for whoever walked in!

Me and Cally - as a Cat - and Chelsea, who said she looked like a blue M&M while wearing the Chemo protocol scrubs.

So the chemo dripped and dripped and dripped. And you know what? I didn't really notice. I brought candy to give our - Reece's Peanut Butter Cups - and the Trick or Treat was my distribution method. I put them in the urinal hat. It's a treat if I didn't use the urinal thingy, but it's a trick if I tinkled before I put the candy in it! Good luck!

If you build it, they will come. I had a costume and candy ... the next logical step was trick or treaters! My friends did not disappoint! I had three shifts of Halloweenies!! First, the Essis Family and the Carrol Family, all dressed up and full of spirit!




Frankie, Matt, Michael, Julianna and Lauren


Then the infamous Andys! Plus AnneMarie and Abby! And ... Brogan, their service dog!! Also in costume! Barlie wouldn't keep those devil ears on her head for one minute. Molly actually has devil ears under all the soft fur. Brogan cuddled with me on the end of the bed. Plus he made a fun stir on the floor when all the other patients and nurses heard I was harboring a furry friend!



Abby, AnneMarie, Andy (in his Melody wig), Andy and Brogan

But wait, the night wasn't over yet. Drip, drip, drip and still I had more friends! This is the hardcore crew - The Speitels! They hit the streets, filled up their bags and still had energy left to entertain "Mer Bear" as they call me!! They came with smiles and presents and photographs and ... candy!! I've never seen four boys hang out in a hospital room with this crazy girl in her 30's and have so much fun! I would have been full of "Can we go home yet??" But instead, they were full of laughs and funny poses.

Nicholas, Noah, Me and Angie, Colin and Luke in front. Poor Pete isn't in any of the pictures because we make him take them all! We love you Pete!

Nicholas is probably the most reserved of the four boys ... but when you tell him to "Strike A Pose" the kid has his go-to move! We showed them off on the Oncology Floor!

Work it! Work it!

So as you can see, Halloween was no bust. Cancer couldn't take that away! I felt good. My numbers were good. I had a blast all day. I was happy to be surrounded by people who love me. I was full up on Reece's Peanut Butter Cups. I slept like a baby that night. It's all good. I don't think I would have even thought to have fun without a Cosmo Costume. So a special thanks again to the Smithgalls. I have you to thank for my husband ... let's add Cosmo to that list! Happy Halloween!

Treat, Not Trick!

My number went down, my number went down, God Almighty, Thank You. My number went down.

I was flipping out a little bit on the inside about today's blood draw. It's done nothing but go up for like 6 weeks - despite a surgical resection, hysterectomy and 24 hours of straight Methotrexate. If it went up again I was going to go from semi-calm to total freak-out in like 3 point 2 seconds. Instead, I felt a rush of relief, like the elephant that had been standing on my chest stepped off. Oh sweet relief!

The number was 68. It dropped to 10. Wow, what a drop. What a satisfying drop. It's working. The drugs are working. Just to give you a small glimpse into my tortured psyche the last few days, I was sure I knew why the chemo wasn't working. We don't really know where the cancer is. And if it's in your brain, chemo won't pass through some special membrane. I was just so worried that the reason we didn't get results right away was because I had brain cancer. And at that point, just take me out back and shoot me. So every time I put my head on the pillow and it would pound from the racing thoughts and the tension, I thought - it couldn't possibly be the stress that's making my head pound. It has to be brain cancer. This are not the thoughts of a person who is well. And I'm trying so hard to be well.

I went back to counseling yesterday. I've been going to counseling almost continuously since I was 14. After my parents got divorced, it was a great way to talk and think things out and gave me a real sense of understand and peace. I stopped going when I first got sick because every time I'd make an appointment, I would end up cancelling it because I was feeling so ill or had to be admitted or just didn't want to get out of bed. It's obvious now that was probably the time I needed to go the most. But people don't see things so clearly when they are in the midst of them.

I had a bad day Friday and knew then I had to go back. There's a hole in my being, a cavern in my soul because of that hysterectomy. But things have been moving so quickly, the plans have been piling up on each other - what should we do? how quickly do we have to move? who should we call to confer? The gravity of the hysterectomy got lost. But now I'm getting those thoughts - the racing thoughts that just won't stop. I'll never be pregnant, never have a belly, never feel a baby kick inside, never buy maternity clothes, never send Chris out for ice cream and pickles, never have my water break, never push. Some people say, "it's not all it's cracked up to be." They are trying to help, but I wanted to determine that for myself. I try to push the bad thoughts away and think of happy things. Hailey. The Beach House. Velveeta Shells and Cheese with a side of Patio Pizza. But the bad thoughts are strong and they push their way in. So now I'm going to sit with them, feel them, think about them and accept them. There is a profound sadness living in me right now. It will go away someday, or subside, or change into something else. But for now, it's really, real sadness. I pray God will help take it away.

In the meantime, days like today are happier days. Good numbers. Good friends to help. Safe from the storm. Ready for Halloween, Lanc. General Hosp. style! Wait until you see me tomorrow for my next hospital admission and round of chemo. Let's just say, I didn't call this blog Cosmos and Chemo for nothin'!

Quite the Hospital Stay

The blog is a little behind. I know in this digital age, all this info should be instantaneous. But I'm so tired it takes me a couple days (or a week or two) to get the blog up to speed.


So backing up to my first hospital stay ... I walked into a decorated hospital room!

I don't know if you can see it very well, but there are streamers and stars and sparkly decorations all over an otherwise bland hospital room! Now that's some VIP treatment!

The staff of 8 Lime, AKA: The Cancer Floor, asked me to do their team's Relay for Life, remember? So, because of that kind invitation and that emotional day on the track, I know a lot of the girls on the floor. Cally is the ring leader and she's always been wonderful. But to walk into the hospital room to decorations was above and beyond!

It was pretty funny being admitted. They have to have a volunteer bring you up to the floor. Now, I don't need a volunteer and that's what I told the lady. But she said it was required. Fine. She also asked if I wanted a wheelchair. Now that's where I draw the line. I can walk to the floor by myself. So I pass on the wheelchair but agree to be led by a volunteer.

That's when I meet Gene. I'm sure he's a kind, old soul. And by old I mean like 97. He's hunched over, not super smiley and the first thing he says is, "You should have taken the wheelchair. It's a long walk." I thought, does HE want the wheel chair?? I'd be happy to push him up to 8 Lime. Again. What's the point of a volunteer if you're pushing him in the wheelchair.

So there's Gene, trudging along, shuffling in his orthopedic shoes with Velcro and his sweater vest. I'm trying to make small talk with him, but he's obviously pissed I made the wrong choice on the wheelchair question. Then Mom and Marcia are a few steps behind me, exchanging looks about who is going to catch Gene if he falls over from this walk.

Well, the killer of the story is when we get to my room. The door is closed and Gene just walks right in. But the girls were in there still decorating. When they see the door suddenly swing open, on instinct they shout, "Wait, stop! Don't come in here yet!" They simply wanted more time to sass up my room, but damn did this throw Gene for a loop. He was so confused. I walked in the room anyway, gave hugs to the girls. He is standing there wondering why there's a party and if this is even the right room. Hysterical. If only we had a wheelchair for Gene to sit down in and catch his breath!

I'm OK

So this is Week #2. The Non-Hospital Week. I went to the Chemo Lounge with Kristin on Wednesday. Marcia and I arrived nice and early. The infusion during Week #2 is so long we have to be the first people there and we're the last to leave. But it's only one day, instead of two and I still get to sleep in my own bed.

I feel very, very tired. And then bored. I'm listless. I'm really trying to let that go though. Each day I think, what did I accomplish today? A load of laundry? Finished reading a People Magazine? Return phone calls to family and friends? Dust up some of the dog hair? I need to feel like I did something. But I think I'm going to change my mindset on that. It might be a good day if I actually accomplish nothing. Just lay around enough to let the chemo kill the cancer that's hiding.

Happy to be Home

You don't sleep well in the hospital. Have I mentioned this?? It was so wonderful to come home and sleep in my own bed Thursday night. I kept pushing the nurses to get me out as soon as possible. One fun nurse says, "Why? Do you have a hot date?" Obviously not, but one is happy to do anything but sit in the hospital getting chemo.

Despite being in my own bed, I didn't sleep really well the next few nights. I have to take the "rescue" drug every six hours, so this time it was 7 and 2. Seven am then 1 pm, 7 around dinner then 1 in the morning. You know how you don't sleep well when you have to get up for something important ... like catching a plane, or a big morning meeting, or running a marathon (I'm thinking of a Seinfeld episode where the guy misses the marathon because of an AM PM problem with his alarm.). Well, I think I was having alarm anxiety and couldn't get a good night's sleep.

But Chris held me in bed, which makes me feel happy and warm and safe. And Mommy doted on me, and did the errands and the laundry and all the wonderful things only Mommies can do. I don't like the hospital days. I would rather been in the Chemo Lounge with Kristin and all my friends. But I had worked myself into an anxious tizzy before the hospital admission. So at least now I know it's not that bad.

Dorothy did have it right: there's no place like home.

Let's Do This

It's on. It took a little while to get "on" - but the chemo is dropping and will continue for 24 hours.

Mom is here. chris came to visit in between each case in the OR. It felt like a nice treat when he walked in the door. Marcia was here for several hours. The several hours while we had to wait for chemo to bed dropped off at the hospital. That's a story for later.

I'm trying to make this as much like going to the Chemo Lounge as possible. So I'm trying to sit in the BarcaLounger a lot rather than being stuck in the hospital bed. I miss Kristen and my chemo friends, but having Mommy all these hours is such a blessing. She took the picture below.

I'm wearing the great, bright pj's Marcia bought me - the top anyway. It's embarrassing to say I'm not wearing the bottoms because Barlie ate the crotch out of them. Classy, right??

Trying to drink a lot of water and take the anti-nauseau meds. Now we're going to try to get some sleep. Lots more to report but it will have to wait until tomorrow!

Much love!!!