Hair Today, Gone Tomorrow

I've had cancer so long and been blogging for so many months, I can't remember what I wrote before. I'm pretty sure, the last time I lost my hair, I used Hair Today, Gone Tomorrow as the title. It goes to show you, I'm really not that creative.

Lost my hair for the second time. The first time was traumatic, this time was just dramatic. Chris was in Dallas for a conference. I had hoped that my hair follicles would hold on until he got home. No such luck. I took a shower that morning and just the force of the water alone was enough to detach my hair from my head. When I first stepped under the stream of water I could feel hair leaving my head and trailing down my back. At first I was creeped out but then I realized it was just locks flowing down my body toward the drain. It was then that I made the decision to just do it - use the water to its full advantage. I kept putting my hands through my hair under the water until there was very little left. I did open the shower curtain halfway through to get a look at the damage. And man did it look damaged! I had bald splotches where I had concentrated the water and then other sections still full of hair. Would have been a great freaky look for Halloween, but not for life, so I just kept washing my hair away.

This was the result of the shower-hair-removal-method.

 

 

Not the cleanest job, that's for sure! Look at those bangs! They just wouldn't let go. And the sideburns - I mean, c'mon! So it wasn't a total success, but I wouldn't call it a total failure either. I had to have Chris shave it again, to clean it up a bit, but it took like 6 days to get to that. You would be amazed how little you get done on days when you literally have nothing to do!

 

This is what was left behind. Now, if you have a problem with clogged drains - like we do - I don't recommend this method. You're sure to be bathing in ankle deep water because nothing goes down that drain after you do this. But like I said, I didn't have much of a choice after the power of the water made the locks leave.

Let's talk about something else important - how fucking dark that hair is?? I am a blonde, right? I mean, it's not my imagination that it says blonde on my license and that I act like a total ditz half the time. I've never actually dyed my hair - too expensive, have to sit at the salon too long - but I've been rocking Sun-In like a champ for decades. (Compare $3 bottle from CVS versus $150 dye job every 8 weeks. Sun-In wins every time.) So I've always had a little peroxide help but that hair looks black!

In anticipation of losing the lovely locks, I had Ronda take my picture again. It's clear I'm not one to run away from a camera. Plus, Ronda loves a muse. So it's a win-win and I wanted to document my cute pixie do before it left. So this is three months worth of hair, post-chemo. If I'm lucky, it might be like this again in about April.



 

Note: Ronda loves taking pictures by our stone wall. It really does make for a fun back drop. The best part of this picture? Not only is my hair a work in progress but so is the wall. Look closely, our new mason was about 75% done repointing the cement that holds those beautiful stones in. So the bottom half is finished, that top foot or two is still loose and cement-less. Thankfully Hurricane Sandy had already passed through and none of the stones fell on my head. Love a good photo shoot and love the wall after it's been secured in place for another 60 years.

 

 The hair looks a little blonde here, right? It's definitely lighter on my head than it was in the bottom of the tub! Everyone kept saying it looked like I had frosted tips. Darker at the roots, lighter at the ends. No matter what color it was, I was happy to have it on my head.

 

So happy ... I couldn't keep my eyes open! I like to include the fuck-up pictures so you know I'm not a total narcissist. I can't take myself seriously, so you shouldn't either.

Bald is in ... at least in my house anyway. And again, the silver linings ... now I take a really quick shower and I don't have to shave my legs ... because that hair fell out too! There's always an upside!

Ok, Getting Better, Much Improved

Hi. Wow. What a week. I will go back in the next few days and chronicle the last few days because they simply need to be documented properly. But for now, I've turned the corner. Thank goodness. Several days ago I could not actually get out of the bed. It scared me. It felt really bad. But I am much better. I would say I'm at 45% - which I think is pretty low. Yet, at one point, I think I hit an all time low of 15%. That's bad. So I'm loving 45. And still trying to envision 100%. I can't remember when taking a shower was something you just did before going to work. Not an event that may or may not take so much energy you have to take a two hour nap naked, wrapped only in a towel because you didn't have it in you to even put your underware on before you crawled back into bed. (Warning to those who just walk in my house!!)

My husband is an angel. How did I get so lucky to get him? He said to me the other day, he thinks everything in his life has oddly added up, somehow come together and prepared him for this moment, this time, this job to care for me. I think he's right. I am so weepy now and I cry just thinking of my absolute luck and blessing to have Chris. He's my booba. He's my other half. We're Team Cooke and he's the captain. I like to think of myself as the big breasted, perky, ditsy cheerleader. He is clearly hot, quarterback of the football team, science club champion and class president part of the team. He's a catch and I know it and I'm just such mush in his arms. It's really the only place I want to be. It's warm and safe there. He came home the other day in the middle of the storm and said, "I took the next two weeks off. I need to be here." I was shocked and instantly thrilled. I never felt so loved.

I haven't fainted lately. I am again in control of when I go to the bathroom. I didn't walk for several days and used my sister-in-law Hilary's wheelchair for a couple days. She's a trooper and only uses it when there's a day of too much walking. She graciously let me borrow it because there were days of just no walking. Bald, wrapped up like a Babushka (?) and sitting in a wheelchair is not a good look. Makes you look like your sick. I hate looking like a sick person. I def looked like a sick person.

My favorite part of the wheelchair use though was Mimi. She's Kristin's right hand woman at Dr. Evans office. And Mimi calls 'em like she see 'em. I love her personality. We are buddies and because she's Mimi and I'm Mimi to Hailey and William, we are naturally friends. But I did go to the office in the wheelchair the other day. To be clear, it was necessary. I could.not.walk. But I know full well, this look is dramatic and over the top.

So, Marcia wheels me into the office. Mimi and Kristin are down the long hallway to the Chemo Lounge. Mimi can see me and says from there, "Oh for God's sake!" meaning, "Look at this bitch, she's in a wheelchair?!? Is that really necessary?" I laughed as Marsh pushed me all the way down the hallway. When I got to Mimi I said, "I know, right? Drama Queen. I need MORE attention!" It's good to laugh, even when you're bald and in a wheelchair.

I go for my blood work again tomorrow. The last number was 5.6. I would really, really LOVE for it to be less than 2 - meaning cancer-free. Still have 6 more chemos after that, but it's one step closer, right? If the other numbers are good, I will go back to Week #1 chemo which means hospital on Wed/Thurs. Before I try to control everything and put a whole plan in place, let's just see what the bloodwork says. But I'm feeling good about it.

Katie was a dream of a caregiver. I miss her terribly already. More about our time together another time. But another of the "high school girls"- Jesse - lovingly arrives Wednesday. She's a chemo nurse at St. Jude Medical Center in Memphis. Like, hello? How awesome is that? She's good peeps and cancer smart. I can't wait.

Goodnight and thank you for the prayers that just helped me get through this bump. Would still be trapped in bed without them. xoxo

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.