I thought I knew what to expect. I thought it’d be easier. I think I was wrong.

Ever since I stood up to begin packing to leave the CAKE center and come home, my muscles have been freaking out. My calf muscles especially just lock up and ache involuntarily and nothing I can do will stop it. I was able to ride a wheelchair down and out of the hospital but walking around the house I look sort of like a young Forrest Gump (pre-”magic legs”). It’s very weird.

And when I talk my lips tighten up into a sort of pucker face and lock up that way. Try as I may, I cannot use the same muscles to just pull them back to where they should be. This makes talking a challenge. I think if I put my hand over my mouth for a few minutes to sort of warm it back up, then it relaxes and I can try again. That is, if my hands aren’t already cold.

The needles and sharp pains in my fingertips and hands have returned when I touch even slightly cold, often just room temperature things. I just tried to light a large Yankee Candle and the glass, although it’s been indoors for several months at a cozy 71 degrees, made my hand hurt and then some of my fingers locked up. The fingers in my right hand especially will lock up if I try to use them too quickly…say, to type or reach for something.

Apparently this is all normal and to be expected, nothing to worry about. It just kind of makes it a challange to maneuver around the house for the next couple of days. Climbing those stairs to get to bed tonight is probably going to feel like an Olympic feat! (However, I am taking steroids to help control the nausea so I guess that disqualifies me for any sort of medal!)

I’m totally exhausted and I need a quick nap so I can sort through, reorganize and write up a schedule for all of my meds for the coming week. Doc threw me three, maybe four new prescriptions. Honey’s out hunting down a bigger daily pill sorter. I will need it!

If you missed it already, take a look at the post before this one (below). It’s Honey’s post from earlier today at the hospital from HIS perspective! I am going to try to convince him to write more posts on here in the future. I loved reading his perspective and I want to hear more! Don’t you?!?!

Here we are at the Hospital today. C.A.K.E. number 3 of 4. It is quite a process when we get here. Today in particular we had some things to do before treatment started.

We dropped the dogs off at the vet this morning so that they can get their vaccines and checkups. We dropped them off around 7:30 this morning. WEEEEE. Next we join the demolition derby to get to the hospital. Let me talk right here about what my normal drive is like…I get up at 4 am ish and drive to the light rail station to catch the 5:05 am train. At that time in the morning there is hardly anyone on the road and I get to go to work and skip out on the road rage fest that can manifest itself on the Colorado roads. (pause…hair time…done). So we both get to have a little taste of normal drive time traffic. FUN.

OK. So we make it to the hospital. Oh yeah. I forgot to mention that I haven’t had breakfast yet. Add in the juices of drive time traffic with the stomach acids of my stomach trying to digest itself to maintain my current figure and you have something similar to a strawberry and nitro glycerine milk shake. Believe it or not we are early to the hospital. YAY. To prevent Mr Hyde from showing up (he was peaking out behind my sweatshirt hood) we stop into the cafeteria and grab some grub. Now there has really only been one hospital cafeteria that I thoroughly enjoyed (that being the one at MD Anderson) but lets just say that a cheese and onion bagel with cream cheese and a cinnamon roll helped this cafeteria here move up the list. Mrs Honey had some yogurt, banannas, and hemp/flax seed granola in the car on the way to the hospital.

Fueled up

I tell Mrs Honey to go ahead and go on up to the infusion center and I will stop in the pharmacy and pick up some prescriptions. Since we have ironed out our issues with Nurse Skippy and renewing prescriptions I have no issues today picking up items from the cashier. I made a comment to the cashier about how much easier it is today and she says “Yeah I remember you from last time.”

Next I hike my way up to the infusion center to find Mrs Honey. She is in the waiting area and I sit down next to her. Mrs Honey gets called back to have some blood drawn for testing before they begin infusions. She comes back with a little puck like we are waiting for a table at a busy restaurant. Nurse Skippy comes over to talk to us in the waiting room. I think that since we have talked with his manager and talked with the president of the Hospital Nurse Skippy wants to make sure that we feel more comfortable. He does a good job spending some face time with us today and we can no longer call him Nurse Skippy. He will forever now be known as Nurse McFly. If you meet him he will remind you of Crispin Glover as he portrayed the father “McFly” in Back to the Future.

Wheeeee! The nurse comes into the waiting room calling for us and asking if our puck has been going off. It hasn’t but it is now time to move on back to our “room” for todays treatment. We head back and Mrs Honey gets hooked up to take in some saline and steroids to help with nausea. Wow…our doctor comes by to catch up with us and review the blood work from earlier today. Mrs Honey talks about many things with Dr and we get the go ahead and all clear to start todays treatment. Dr gives us a couple of prescriptions for different drugs.

First drug going in. It only takes 30 minutes for this one. As you have already seen today it along with a new nausea medication gave Mrs Honey some good stream of consciousness blogging capabilities. I started my post here right after she finished on hers. OOP Time for my go-for duties. I go drop off the prescriptions at the pharmacy downstairs and come back up to reschedule our next appointment with Dr and C.A.K.E.

Time goes by and Mrs Honey starts to get hungry. I run down to the pharmacy and pick up the prescriptions I dropped off and then go to the cafeteria for lunch stuffs. Mrs Honey gets a turkey sammich on sourdough and I get a buffalo chicken wrap. (this cafeteria is still holding up on the ladder…it won’t ever surpass MD Anderson’s unless they do some major changes but it is still doing good).

OK lunch is done and more C.A.K.E. for Mrs Honey. This one goes for about 2 hours. Mrs Honey has decided to nap and I am finishing up this post. I think that I will attempt to watch a movie on Netflix.

Well here it is….Mr Honey’s perspective for now. I am the go-for guy all day and most of the weekend. I have no problem with that because I love Mrs Honey and would do anything for her.

WHOoooooooooooooaaaaaahhhhh

they just hooked up the avastin and it has shot me off into space
my head feels like it’s a bowl full of jelly
takes a while for my eyes to focus
–don’t worry, mom, I’m still watching my grammar and spelling and punctuation!
there was nausea before
Doc threw a bunch of new puky prescriptions at me already today so i took one
she said some kind of LEVELS WERE HIGH
only slightly high
LPTs
Something about my liver function.
Not unusual and to be expected and undercontrol and go ahead with the CAKE today
blood is fine
ate two saltines
musta’ been the strong ass PHYSICIAN’S STRENGTH coffee I had when I got here
acid acid acid acid acid
fingers slowing down
eyes are droopy
all i do it sit then pee then sit then pee then sit pee
am I a dog? This is what dobby and scarlett do
I’m clenching my jaws no no no no no stop
Honey’s going to blog here today
He’s been getting ready for a couple days now, thinking about what he’s going to say
I thought it might be nice for ya’ll to hear from him…hear things from his perspective.
Although it could turn out that he’s just going to give you a review of the first dozen songs he has conqured in Guitar
Hero’s Easy mode. Who knows! Tune in this afternoon to find out.
Today I was going to walk the infusion hall and search for young adults like me. I’d better not do it right now. Wait a couple hours. But everyone sound old and foreign. WTF? No wonder the nurses light up when I come through with my bright pink hair, hello kitty pants and cherry-laden kicks. Honey and I walk in and we bring the PAR-TAY! Heh
I have to stop
and pee again
plus there aretoo many keys to press to make this work.
Sleep
BBL