May 1

Back on Monday, in response to my complaint about not being able to sleep, Mary once again prescribed me my best friend, Ativan. Since it's an anti-anxiety med, she thought it would be the best bet to help me with the muscle thing I was describing when I try to go to sleep.


I tried picking up the Ativan on Monday but forgot about the necessary pre-authorization for my scripts that is now needed by Medicaid. Mary had convinced me to come back Wednesday for another hydration session so I figured I would just grab the Ativan then.

Monday night around 8:00 PM the dry heaving started back up again. I sent Mary a note letting her know, just to keep her in the loop. Here's our correspondence for your viewing pleasure with her partner in crime, Deb, thrown into the loop too. Easier for me to copy and paste my week than try to sum it up. Just call me lazy girl. :-)


Hi Mary,

You would think with all that we pumped into me today that I would be good to go but I started dry heaving again about an hour ago. That Cisplatin is nasty stuff! I'll try to ride it out without any more meltdowns like today. Dr. Kim has high hopes that I'll be up to snuff by Wednesday.

I went to pick up the Atavan after I saw you. Forgot about Medicaid needing pre-authorizations on scripts. I'm going to pick it up when I'm there on Wednesday instead. I might try extra morphine right before bed tonight to see if that helps in the sleep department at all.

Thanks for being there for me today. < hug>

Cathy
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Good morning Cathy,

I am sorry to hear that "it" started back up again.
I think its very important to use the compazine and the ondansetron alternately.
I also think that the ativan will help A LOT!!
Is there someone that can pick this up for you????
Using the ativan for nausea control is very effective especially with the delayed nausea which happens with cisplatin.
Yes, it does have a sedative effect, but I think that sleeping is better than vomiting.
Please let me know how you are today.

Mary
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Hi Mary,

I used the last of the zofran last night. I took the compazine this morning though. I don't feel like the nausea meds are effective at all but I'll keep taking the compazine every 6 hours anyway. Better safe than sorry.

I don't know what to say about the Ativan. I wish we had thought of it sooner. I'd try to go get it today but I realized part way through my drive to the hospital yesterday that driving is not a good idea for me until this nausea goes away. I'm hoping I'm okay for the 11:00 tomorrow morning! Even more importantly, Scott's teenage daughter has art being highlighted in an art show tomorrow night that she wants me to attend. And I paid $60 for unlimited tanning for the month and haven't been able to go for a week now. I look like a ghost in my two new tankinis that arrived yesterday! UGH! :-)

Okay, me and my nausea are headed back to the couch for the day. Taking it one day at a time..........

Cathy
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Cathy,

I think that driving is not a good option.
Is there someone on your list of friends and family that can bring you tomorrow?
As far as managing the nausea today: please refill the ondansetron and have someone pick up the ativan.
I think the ativan will make a big difference on how you feel from today to tomorrow.
Continue to push the fluids; if you think that you are taking a step back from yesterday, please have one of your reliable circle of friends and family call the triage line so that we can give you IV fluids.
Do you want to come in today?

Mary
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Hi Mary,

I could find a ride for tomorrow but Dr. Kim said by tomorrow I should start to be feeling good. I'm kind of holding him to that. Especially since he said yesterday (day 8) is the worst day of treatment and I found that to be truer than true.

Okay, not to be a pain but, the ativan thing isn't making logical sense to me. You didn't even think to prescribe it until I mentioned my trouble sleeping but now it's going to cure everything? That just doesn't add up in the sequencing of my brain.

No, no need to come in today as far as I can tell. Thankfully, I'm not dry heaving today. Just nauseous when I start moving around too much. I think doing tomorrow, what we did yesterday, is the best plan of action. You have my full buy-in for it.

Have a good rest of the day, just don't look out the window, Mother Nature seems to be really working on May flowers today. ;-P

Cathy
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Hi Mary,

I felt like I should check in for the day. The hydration treatment today didn't make me feel nearly as better as it did on Monday. It is 9:00 PM on Wedneday night and I am once again severely nauseous. I took the ativan at 6:00 PM. Not because I was feeling sick but because it had been ~6 hours and I wanted to stay on top of it, if it was helping. Now it's been 3 hours and I'm sick again so I would assume it's not helping. One of the nurses mentioned something called Marinol. She said I might want to ask if I can try it. Another nurse mentioned some kind of patch that you put below your ear that she heard can help with this type of nausea. I'm ready to try anything. I'm supposed to be driving to Atlantic City on Saturday morning and it's not looking good right now. :-(

Cathy
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Cathy - I think you need to come in again today for more fluids and anti nausea meds. Marinol is mostly used for an appetite stimulant. I want to continue with with the Ativan, but I think we should try another med today with the fluids to see if that works better. I have made an Infusion appt for you at 2:30 and I will come back and see you there! If we need to bring you in for fluids for a few days to get you feeling better - that's what we will do! Please let me know that you got this message. Thanks.

Deb Paul NP

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Hi Deb,
1. I'm feeling incrementally better today. I've had a few waves of nausea but they have come and gone and I ate an entire blender of orange juice smoothie this morning so I think we're on the upswing.
2. I have bigger problems to deal with today than nausea. My TEP fell out. I'm seeing Dr. Miller at 2:40 today to see what can be done about it. If it's not one thing, it's another. I still plan on seeing you tomorrow though!

Cathy
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Hi Cathy,

I am glad that you have the appointment with Dr. Miller and feeling incrementally better.
We do have the infusion slot and a couple of your electrolytes are low: your magnesium and potassium.
Spoke with Deb and we are encouraging you to keep the infusion appointment today and in addition keep your appointment tomorrow for hydration. Our goal is to get you feeling better and better! We will work around Dr. Miller's schedule.
Thanks~

Mary
Let us know
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Cathy! Glad that you are feeling better and glad that you will be seen today by Dr. Miller. We will plan on seeing you tomorrow for fluids and some electrolytes (potassium and magnesium low). If you change your mind about today - please let us know - your appt is at 2:30 - let me know one way or another so I can either cancel or keep that appt. Thanks so much! 

Deb
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Hi Deb,

I'm torn about the Dr. Miller appointment. I'm freaking out that my TEP fell out and glad he can see me so quick to find a solution but man, it's gorgeous out today, who the heck wants to be stuck in a gloomy hospital?? That being said, no, I'm not getting fluids today. :-)

I'll see you at 10:30 tomorrow!

Cathy
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So, I did NOT get fluids today. I had a conversation with Mary a few weeks back that my new goal in life is to spend as little time at Strong Hospital as physically possible. I have cancer. I'm dying. I'll likely be dead before the end of the summer. Who the hell wants to spend their last remaining days getting hydration treatments on a daily basis?? I said I was actually feeling better today. That's great that she claims she wants to help me feel better and better but I don't think she's a big picture type of girl. Plus, I had already agreed to have one more hydration session done on Wed and then also agreed to have one tomorrow which is yet another "extra" two days in the hospital that was unplanned for. You give people an inch, they want to take a mile!

Anyway, I popped in to see Dr. Miller today about my TEP flying out of my throat. I told him I was surprised that I'm not choking on spit now that the TEP is no longer plugging the huge hole that leads to my mouth inside of my stoma. He took a scope and checked things out. For once, there was good news. It turns out whatever little pocket of flesh they had tapped into to insert the TEP had healed into a dead end so there's nothing to leak. Yay! That means I can just leave the TEP out and get on with things. Of course this also kind of irritated me because it would also explain why my TEP stopped working and I never managed to "speak". But whatever, it's all moot (mute) (Ha!) now.

Last night baby doll got home from Jessica's art show, which I was unable to attend because I was feeling so lowly still, and I was crying my eyes out. He held me for a while until I was sniffled out and then listened to me gripe. I told him that according to the internet, the severe nausea shouldn't last more than a week and I was on like day 9 and was still dry heaving like crazy and what the hell was wrong with me that I wasn't getting better?!? He was like whoa, whoa, whoa. What do you mean day 9? You just had the treatment end on Saturday. Today is Wednesday. You're on day 4.

Oh. Right. Why am I counting from when treatment started? Well, talk about a hefty dose of perspective. It didn't make the dry heaving stop but mentally, I think baby doll just about cured me! 

So that's been my week. Other sundry stuff: one of the secondary chemo drugs I was given caused a rash to break out on my face. Dr. Kim had warned me that they would look like zits and I'd be revisiting my teenage years. Although he said they were definitely not zits. Well, he was right. The blisters came up within a day, they're all over my face and head and what he failed to mention is that they HURT. They're all over my scalp so brushing my hair is SO not fun. Grrrrr. Did I mention I have a new rash around my feeding tube too? Yep. Itches like crazy but if I barely touch it, it starts bleeding all over the place. I have two e-mails in to LiLo. I need to get the darned thing replaced before the cruise anyway. She hasn't read either of my e-mails yet though. I might need baby doll to call her office tomorrow and find out what's going on. She might be on vacay. 

<sigh> I think that about wraps up the health crap for now. 

Today, I'm going to leave you with a crazy cat lady story.

I like kids. I did not have kids. There are about 3,608 reasons I did not procreate in this lifetime but that's another story (or two). One of the things I have always envied moms is the way that kids simply know that mom will make it better. A kid falls down and skins their knee. They don't want dad, they don't want the babysitter, they don't want the teacher, or a doctor, or a fireman.....they want mom. Period. And it always warms my heart to see a kid fall on their butt, start to cry, and run to their mom, throwing themselves into her arms wholeheartedly. And I've always wondered how good that must feel. Well, I would like to announce that I got to find out. And the actual moms out there will probably pooh-pooh me but I don't care.

I came home the other day, threw open the back door to let the dogs out and continued on to the kitchen. Within seconds I heard a cat screaming. Yes, screaming. Gave me a heart attack. I went flying through the family room and out the back door. Somehow, Ethan had tried to jump the fence in the back of the yard and got his leg stuck at what I can only assume was a very painful angle. As I'm running across the back yard to save him, some strange guy doing yardwork at his mom's house walked over to try to get Ethan unstuck at which point Ethan panicked and immediately got himself unstuck. He leapt off that fence came belting over to me as fast as he could and literally jumped into my arms. It felt so good. I am his mom. I am there to save him, protect him, and kiss whatever boo-boos he has. As it turns out, he was fine. Not a scratch on him. No limp. I'm still not sure exactly what happened but I glow with the knowledge that he sees me as his Mom, the cure all for everything, the safe haven in the storm. :-)