The Witch of the East

It was bound to happen. Somebody finally pissed me off. Thing is, she didn't admit that I fell through some kind of crack in the floorboards under the well oiled machine and an appointment got screwed up somewhere. Even when I asked point blank what happened she ignored me. Repeatedly. She skirted my question and restated my new appointment information. Told me she had to go now. I can accept that things go wrong with scheduling when there is so much to co-ordinate. What I have a hard time with is ducking responsibility. So unfortunately I have dubbed a nurse the Witch of the East.

Bobby already thinks she dresses like Morticia and I think her makeup makes her look like Sylvester Stallone's mother.

Still. I don't wish a house to drop on her.

Poppies!

Bobby came home from the grocery store with these tonight.

Periodically he does that. Just because

he loves me.

My team continues to impress me. Seems like getting approval from insurance companies for certain drugs can sometimes be a bother. Paperwork must be submitted! My rad/oncologist nurse and My Pharmacist Roz (yes, I have a pharmacist) worked together to get my drugs signed, sealed and delivered without a hitch ~ much the same as my MRI snafu which was painless for me. They worked it all out over a period of three days with shipping overnight tomorrow at no extra cost. I was even approved for a larger amount of a drug in one case, impressing the pharmacist.

FedEx should bring me the goods tomorrow.

The Noive!

Hunk: Now look here, Dorothy, you ain’t using your head about Miss Gulch.

You’d think you didn’t have any brains at all.

Dorothy: I have so got brains.

I feel so much better. Last night I announced to Bobby, “I can wipe my feet on the front mat”. Both of them. Since my surgery we haven’t had substantial rain and I haven’t felt the need to do that. But yesterday Bobby and I came in from a long and tiring day and without thinking I wiped my feet. My weaker right leg moved back and forth, picking up that right foot and placing it squarely down in front of where it had been - nice as you please. Then I swiped it behind me and shuffled it back under me, putting my weight on it while simultaneously picking up my left leg and repeating those steps with it.

I wiped my feet!

I’ve been feeling rather depressed about losing most of the amazing physical gains I had on the right side during that first week after my surgery. I still have some increased sensation, but a lot of the awareness of my body parts, called proprioception, has faded as mysteriously as it appeared. Last night’s little rain episode was a big boost.

Did I mention that yesterday was exhausting? I got the call from my terrific insurance nurse Tuesday with the go ahead for my MRI. She just caught Bobby and me on the way to Hopkins We were able to schedule it for yesterday along with two other appointments and now I believe we’re DONE until treatment starts. Wahoo! Every time someone said, “You’ll have to schedule a blah blah blah before your treatment starts” I said,” Can I do it today?” So rather than go back again, this was our day (times approx) for a CT scan.

• 8:45 Group teaching for oncology patients
• 10:30 Met with my daily oncology nurse Kim
• 11:30 Met with radiation oncologist’s nurse for teaching and to discuss treatment plan
• 12:30 Met with both of the medical oncologist’s research nurses
• 2:00 Bloodwork
• 2:25 Late lunch at the hospital in an actual restaurant with a waiter and a sushi bar
• 3:15 Super MRI – New and improved! With bigger magnets and louder sounds! Delayed, but not as long as they said.
• 8:15 Home! With Starbucks and Chinese in hand.

I have no idea what anyone said to me. Oh, I have all the materials, and I’ll go over it and Bobby and I will decipher it all and remember. But still. Haven’t any of the professionals there heard the expression “less is more?” In the group class, the person talked so fast I was hearing her, but not absorbing any of the details - just sort of zoned out. A lot of her subject matter was aimed at folks with IV chemo. I felt guilty sitting there with my radiation and oral chemo with lower side effects self.

One thing is for sure. I feel safe. I feel they all know what they are doing, have been doing it for years, and are very up to date with the way it should be done today. They are confident in themselves and in their abilities. They can make decisions, adjust someone else’s schedule, and empower a pissed off lab tech to draw my blood painlessly with one stick in my “bad” arm even though I came in the back door with my paperwork and lab slips in my hand. They'll do anything to get me better.

People at Hopkins have so got brains. And hearts. (and homes . . . the noive!)

Why, oh why can't I?

How is it that a gigantic institution like The John can't consolidate their department billing? Take the general category of "Radiology". Inpatient doesn't speak to Outpatient who doesn't speak to Radiology Oncology who doesn't speak to Radiotherapy.

Or something like that.

Thank heavens for a friend's husband who gave me a clue a while back, and I have a wonderful nurse case manager at my insurance company who is dealing with this for me. I lined her up before my surgery after hearing about his woes and how a case manager helped him. She's working directly with the lovely lady in the financial/insurance department at Radiation Oncology to make it happen/get the approval.

I just waited for the phone to ring today.

For twenty seven years I did things like that every day without batting an eye because it was part of my job. Yes. I was aware that what I did was sometimes that one thing that made a difference to a patient that day. They say what goes around . . . comes around. Good things will happen for those two ladies.

My appointment is tomorrow.

The Tinman

Oil Can. -The Tinman

The squeaky wheel gets the grease. And the patient who calls her nurses gets her Radiology Oncology appointment. At 4 PM Tuesday I was still waiting to hear about moving my appointment up from November. Fed up, I left a message at the Radiologist’s office that I was seeking a new radiologist. I emailed my surgeon’s nurse practitioner the same. I left a message for my contact nurse with the medical oncologist. I voiced my displeasure to my insurance company RN case manager.

Wednesday I got a pleasant call that my appointment with the Neuro-Radiologist had been moved up to this Friday morning.

So Friday I dance with the Tinman since it took an oilcan to get to meet him.

It's a Twister

Better get under cover, Sylvester. There’s a storm blowin’ up, a whopper.

--Professor Marvel speaking to his horse as the twister approaches.

Last week I got my results on the part of the tumor I did have removed. The other part of the tumor could not be removed because it would cause more paralysis. That will need radiation for sure. Every day Monday thru Friday (because brain tumors are off on weekends don'tcha know) Even with six weeks of daily trips to Hopkins, continuing my physical and occupational therapy may actually help keep me on an even keel stamina-wise. A regular schedule seems to be the key. Regular meals, naps, exercise etc are good so my body doesn’t slip further. Radiation’s biggest side effect is fatigue. Fatigue is a polite word doctors use for feeling like crap. How much? Don't know. Right now I’m in the habit of 30-45 minutes of upper body work every morning before I leave the bedroom. Hopefully I can keep that up since mornings are best for me anyway.

Now for the interesting part. My type of tumor isn’t that common. It does however have a “marker” in the genes of the tumor which indicate I may respond very well to treatment. Cool! Who need those bits of Chromosomes 1p and 19q anyway?!? Having that marker also makes me a great candidate for oral chemotherapy. With other types of brain tumors, it is given at the same time as the radiation and is the current best treatment available. For my tumor it is optional. It’s a pill, very little side affects if any and since it is optional for me, I can choose to stop it if I do have a bad reaction to it.

The most frustrating thing for me right now is waiting for the appointment with the radiologist. Grrrrrr! Seems he has to approve moving me up in his schedule, as my surgeon and medical oncologist have requested. I finally insisted on the next available at least, so I have something in place that can be cancelled when/if he okays moving the appointment up. Yesterday marked 1 week of waiting patiently for a date

So.

That’s what I’ve been doing the last week. I was seeing my surgeon, the medical oncologist, being evaluated for physical and occupational therapy, and attending my great-niece Megan’s 10th birthday party. Oh! Throw in a four day knitting convention during that time. I wasn’t sitting on my butt wringing my hands.

And I need a nap.

P.S. Don't worry, no more painful seizures. I've had mild ones like I've had for years, but they are fewer than before - probably because I'm more diligent with my medications.

Of Course, Some People Do Go Both Ways

Scarecrow said it. I'm doing it. After a truly nasty seizure, I've lost some of the gains I made. I've had partial incomplete seizures for sixteen years. The type hasn't changed thank heavens. No loss of consciousness etc. But this one was a bear. Over 10 minutes and painful. Screaming kind of painful. Scare your husband to death painful. Immediately after there were weaknesses which we checked out with the doctor on call. Since then I've lost a bit of that momentum, even slid back some in ways only I can notice. Boogers. But then I've been slacking too.

We get up at 12 and start to work at 1! Take an hour for lunch and then, at 2, we're done!

Jolly good fun! - theOzmites

I shouldn't be sitting here in front of the computer or on the couch knitting and "taking it easy" as admonished by everyone. Don't beat myself up you'll say, right? 'kay. It took me a while to set up the physical and occupational therapy. The first week was too much input to my body for me to handle emotionally. I probably should have been pushing myself more though in the last few days rather than just wait for the formal therapy to begin.

Today I go to PT and OT and get this trip down the yellow brick road started.

HUZZAH!

Bring Me Her Broom

I'm going to be a celebrity. I am to be presented at a Brain Tumor Conference of some kind at Hopkins. They get all the big brain guys together and reveal my juicy details one by one. Think House only bigger. I wonder if they'll have popcorn? I'd love to put on a lab coat and sneak in. They'll put their heads together and have fun of trying to figure me out and where we go from here. It's not just one doctor saying, "Oh, you need an oil change". It's Dorothy, and Scarecrow, and Lion, and Tinman, and Toto too. Trustworthy folk with a mission.

I am the great and powerful Oz.

Even Oz can be put on hold though. I was all set to go to my regular knitting night. Waiting for a call regarding all this kept me from it. Grrrrrrrrr! On the positive side, I opened a new box of cereal, poured a mug of Frosted Mini Wheats, opened the fridge and reached in with my right hand for the milk which I also poured with my right hand. Picked up the spoon I aimed for and the mug and carried it in to the computer without spilling it and ate it. With my right hand.

Add those things to the list of things I could not do last week.

Ohhhh! Ohhhh! Ohhhh! I can tell which toe Bobby is touching! I could barely tell if someone was touching me anywhere on my lower leg. Now I can differentiate the toes.

Cool.

I can

Here are a few things I can do today that I couldn't do the day of my surgery one week ago.

I can

1. hook my own bra
2. feel the water in the shower on my right side
3. cut my own steak and use a fork in my right hand
4. sit up straight without thinking about it
5. carry a glass of water across a room without sloshing it all over the place
6. stand up the first time I try from a cushy couch
7. walk to my mailbox
   
8. stand up from a chair that isn't up against a wall or braced by someone's foot - and holding on to someone's hand
9. brushing my teeth without bobbing my head up and down on the brush
10. use a regular restroom if I need to
11. open my front door with the key without jiggling to get it in straight
12. eat popcorn with my right hand at the movies and hitting the opening of the bag without fumbling in the dark
13. smile without feeling it's crooked somehow and wondering if anyone notices

And that's just the highlights.

Things have been happening to my body so fast I can barely breathe sometimes. I don't remember what it was like to be able to take care of myself. I have to remember that I'm supposed to take it easy for 4-6 weeks and not bend over and not lift things and not do the laundry and scrub out the tub and weed the garden and mow the lawn and go to The Home Depot to get the sand so I can build a patio out of some granite we have and . . .

I gotta sit down and just breathe.

Bobby and I were expecting to be setting up Homecare with an agency at this point and we're going to the movies instead. I went to my regular knitting group today and freaked out the girls. I know I still have a hurdle while I wait for a diagnosis, but geeze Louise. If my body isn't dragged down by all the paralysis I've been dealing with over the years? Mountains. I can climb mountains.