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!!!

Is This What Rock Bottom Feels Like?

To be honest, it's not rock bottom. Things could be worse. They could always be worse. I could be dead. But I'm not. I'm alive and kicking. I'll be kicking and screaming tomorrow as I head back to chemotherapy.

So about that hysterectomy. It was the right choice, certainly at the time, with the information we had at the time. But it turns out there wasn't any cancer in there. The doctors in Boston did their job. But then the bloodwork was bad. It went up. Again. I feel like it always goes up. We weighed our options carefully. I cried a ton and then we settled on more chemo.

There is still cancer somewhere in my body. We don't know where. That - to me - is the scariest part. I feel like we are playing hide and go seek with cancer somewhere inside my person. We think it's in the lungs. Dr. Evans says history has a way of repeating itself. I had mets to the lungs both times before. It's just that the blood was 35 and that's too little to see on the PET scan or any scan for that matter. So again, we were faced with a choice. Wait and let cancer grow for a little bit, maybe a month and then see if it gets big enough to see on a scan. At least then you will know where it is. Or, start chemo immediately without giving the fucker a chance to grow at all. We chose the latter. I feel fine with that choice. I don't know if I'll still feel fine with it tomorrow.

My dad left yesterday. My mom arrived today. It's been wonderful to have my family around while I wallow. Mommy and I are heading to the hospital bright and early to be admitted for chemotherapy. You remember the Chemo Lounge, right? The fun, bright, almost cheery room full of recliners and friends? Yeah, I can't have chemo there this time. Well at least every other week. I'm being booted to the hospital for an overnight stay because the methotrexate needs to drip for 12 straight hours. Dr. Evan's Chemo Lounge is open a normal, respectable 8 or 9 hours. But 12 is too much. The women there have lives and families and have to eventually go home. I can't just set up shop there permanently (although I would like that.) So off to the hospital with me.

I feel like I had the Chemo Lounge licked. I actually enjoyed being there. I thought I had a good routine going. So to be sent to the hospital for a Wed-Thurs infusion is a total disappointment. I'm anxious about it because I don't know how it's going to go. I'm worried it won't be as smooth or relaxful. I'm sad I won't be able to see all my fellow patients and friends and kabitz about the latest anti-nauseau tricks. The hospital will definitely be different. But I'm sure it will be fine. Mommy and I are going to give it our best shot tomorrow. We're hoping for the best.

It's going to be a few more months of this. While I thought Labor Day might have been the end and I was worried about a firm "finish line" - now I won't complain at all. If there's no formal finish line and I just quietly slip from the Cancer column to the Cancer-free column, that's fine by me. I just really want to be Cancer-free. And sooner rather than later.

Wish us luck. Will update as I can.

p.s. - my spell check isn't working correctly, so now you get to see how poorly I spell without help!

I Know I'm Hot, But Am I Really THAT Hot?!?

Recovering from this surgery has been more difficult than I anticipated. I thought this surgery would be similar to the Boston surgery. Five days post-op then, we went out to dinner in Bean Town. Five days post-op now, I was still in bed moaning and groaning.

My mom kept reminding me that a hysterectomy is a more serious surgery than a resection. And that I've now had 2 surgeries in 3 weeks. This procedure was laparoscopic and done with the robot and includes just 5 little holes, like the other one. But Dr. Evans did have to take out a whole organ rather than just a piece of an organ, so it's understandable it hurts a little more.

The benefit of modern medicine is pain medicine. When you are in pain, take the meds. That's what I did. Chris kept encouraging me to hold off from taking the pain meds if I could stand it. He said the pain meds give you constipation and the fewer pills I took, the better it would be later. It's an argument I couldn't quite get behind. I was in pain immediately and he was worried about bowel back-up later. I thought, "Well, it hurts now. So let's take the meds now and deal with a pooping problem later." Good thought, not a good decision.

My husband is not stupid. He doesn't just make this shit up. I took the pain meds for 2 1/2 days straight - every 4 hours. If I didn't feel like a million bucks, I took a pill. I was uncomfortable all the time and in pain a lot of the time. And when else can you just pop Percocet regularly?? If not post surgery, then when? Well, I paid for it later.

I'll spare you the details. My poor mother, sisters and some of my close friends were getting a blow by blow of my bowel movements (or lack there of) for a few days. Chris became accustomed to me sitting on the bowl and screaming, "Oh god. Oh fuck. OH. MY. GOD." as i tried to successfully go to the bathroom. I did decide though, if passing a poop after 4 days of pain meds is at all like going through contractions during labor - thank god for the hysterectomy. I couldn't do it. I was Lamaze breathing while sitting on the toilet just trying to get through the pain. It wasn't pretty.

What also wasn't pretty was the site of me soaking wet several times a night. I was having night sweats. Bad night sweats. Wet through your pajamas night sweats. So damp your hair is wet and you need to change the sheets night sweats. At first I thought, "Is this menopause??" And how can you get through that as quickly as possible? But Dr. Evans left my ovaries in, so this hysterectomy did not plunge me straight into menopause. I have to wait until I'm 50 to go through these night sweats again. We're not sure exactly why I was having such bad sweats, but thank goodness friends and family bought me new pajamas.

This is what my bedroom floor looked like one morning. Three piles of soaking wet pajamas. I woke up every two hours and was dripping wet. I'd get out of bed and be cold from being damp. Then strip down right where I was standing, leaving a damp pile of clothes. I'd pull another cute pj set out of the drawer and get back in bed. I did this 3 times in one night. That means I wore a total of 4 pairs of pajamas. And if you look closely at the top of the picture, you'll see a beach towel on the bed. That's there because the sheets were so wet. I thought the best thing to do would be to sleep on a semi-absorptive towel.

It was not fun. But it was kind of funny. It was wonderful to have Ashley here for a few days to do all the laundry. She loves laundry and she's a good sister.