Day 104

Monday November 29, 2010

The Thanksgiving Holiday was fabulous....

Now, back to reality....

But what is reality for me these days....let's see....

1. 7:30am: Wake up Teddy and get him ready for school (yes I wake him up late...he is hideous in the mornings....total avoidance responding on my part...also why I always feed him in bed....it's like me giving a replacement behavior....instead of hearing him whine and contemplate all the reasons life sucks first thing in the morning I shove a piece of toast in his pie-hole....works...most of the times at least!)

2. 8:08am: Get in car with Teddy and hot cup of coffee (everything with a fresh cup of coffee is much more tolerable....especially if it has a dash of French Vanilla creamer in it...the real stuff, not the cheapo imitation stuff my father-in-law buys...yucko! Big shout out to the 15th Century Ethiopians who figured out what to do with the coffee bean plant!!!)

3. 8:17am: Start daily therapy by checking in with friend Holly.

4. 8:20am: Return home and feed the Queen

5. 8:30am: Hop in shower

6. 8:40am: Drink second cup of coffee (remember to thank God again for the Ethiopians!)

7. 8:45am: Start providing Queen with options for attire (get yelled at least 3 times....eventually a decision is reached and I humbly change her Royal Pain in the #%^&*!!!).

8. 9:15am: Check onslaught of texts, emails, and phone calls (try to figure out who will be pissed off the most if I don't promptly return their call....just joking...).

9. 9:30am: Quickly drink third cup of coffee and develop the courage to tell Queen we have a doctors appointment (prepare for the stink eye!!! man that stink eye is scary!!!)

10. 9:45am: Put shoes on Queen, load her up in car, all while getting yelled at (so much fun to be yelled at and told you're a bad mama first thing in the morning! During these moments I find myself drifting off into bizarre episodes of running famous show tunes in my head....frequently I find myself playing the part of Maria in West Side Story....As Nina screams insults at me, I find myself singing in my head "I feel pretty, Oh so pretty, I feel pretty and witty and gay...." For those of you under 30, the word "gay" in this song is used in reference to feeling happy and jovial, not to sexual orientation! Anywhoo....slipping away into la-la-land helps me not freak out! At least I'm keeping these singing episodes in my head...I could only imagine the looks I'd get if I walked through Vons belting out "I feel pretty, Oh so pretty....)

11. 10:00am: Arrive at Oncology office to start Nina's chemo

12. 10:02am: Hear Nina cry about getting poked for the millionth time

13. 10:03am: Pray that Nina won't cry for too long and that there won't be any complications

14. 10:04am: Definitely not feeling pretty...stupid song!!

15. 10:05am: Distracting Nina with Mahjong on Ipad

16. 10:10am: Realized that reality sucks!!!! Call friend for 4th cup of coffee...extra strong!!!

Bottom line, we have no "normal" reality. Our lives have been turned upside down. We never know what to expect, what will improve, what will collapse! Since August 19th I have spent my days playing nurse, advocate, therapist, short-order cook, whipping girl, punching bag, etc. I am NO longer the same person. I had no other option but to change!

This morning we did the Avastin treatment. Started off well....then about half way through, Nina started to scream that her skin was burning!!! My poor, precious baby!! Somehow, the needle had come out of the port and the chemo was flushing subcutaneously!!!! Pam took the port out immediately and we figured out that because of all the weight she has put on the half inch needle wasn't long enough any more, that we required a one inch needle. Nina was pretty traumatized and I have to confess that internally I was too!!! So....the new plan was to go home and have lunch, hopefully allowing the swelling to subside and then return a couple of hours later to finish the second half of the chemo. AGHHH!!!! Really???? How shitty!!! Poor sweetie! I loaded her up and asked her what she wanted for lunch since our friend had offered to pick some up and deliver to the house. Of course she wanted....Panda Express. I explained what was happening (she didn't protest God bless her!) and we proceeded home.

On the drive home, I called Todd and arranged for him to pick up Teddy from school. So much for "normal"!!! But then again, that went out the door August 19th!!! We had a lovely lunch and played Wii until our hearts were content. In addition to orange chicken and rice, Nina got a darling stuffed Panda Bear. This made her smile. I am repeatedly astonished at the strength of this child! Every time I start feeling sorry for myself I remind myself to look to my side and see what true strength and courage is!!! Nina, in her 5 year old body, embodies more courage, strength and perseverance than most 50 year old adults. She is my inspiration!!!

At 2pm we returned to the Oncology office. This time, Nina didn't even scream when she got accessed. Again, I was in awe!!! The rest of the Avastin treatment went without a glitch....thank God!!! I think all of the nurses were also praying that it would go without a hitch, worried that I might go postal!

After the intravenous chemo, I dropped off Nina with Todd and ran to CVSTimador (pill form of the chemo) that we were suppose to start tomorrow. Well...the lovely pharmacist informed me that the order wasn't called in and that I'd have to come back tomorrow. Lovely!!! Where is my Margarita-making Umpa Lumpa when I need him?!?!?

By the time I returned home, I was exhausted. Sweet Nina was playing Wii with Todd and beating him of course. I returned a few phone calls before calling Teddy in to do homework. As if my day hadn't been a struggle enough, the boy had to push the envelope. I can't say that he didn't try to contain himself. He did. On multiple occasions he caught himself becoming whinny or obnoxious and corrected himself. Unfortunately for him, by the time we started homework together I was already on a short string. My patience was non-existent and apparently it was obvious to him. I mean, I felt myself getting frustrated, but I thought I was controlling it, hiding it pretty well. That delusion came crashing down the moment he turned to me and said, "Mom...I know you're frustrated but thanks for not yelling at me. You're doing a good job!" What the hell??? Since when is my rascally 8 year old reinforcing my attempts at composure!! I laughed and prompted him to continue. He didn't blink an eye and proceeded forward.

After about 45 minutes (this assignment should have taken 20 minutes at the longest!) he was done. Before excusing him to go back outdoors, I told him I needed to talk to him about something. Here is a summary of our conversation in my favorite format:

R: Okay buddy, so...remember when we talked about getting you a couple of tutors?

T: Yeah (sighs in defeat!)

R: Well....we found them and you're going to start tomorrow. You're going to have one tutor come Monday and Thursdays and the other come Tuesdays and Wednesdays.

T: (Sighs extremely loudly, making sure I knew he felt defeated and discouraged!) Okay, so....who is it?

R: Well the good thing is you already know them. I was able to find two guys to come hang out with you and I think it's gonna be a ton of fun!

T: Who?

R: Well the first is Mario...(I get interrupted!!!)

T: (total HISTRIONICS!!!) MARIO......How could you do this to me??!?!?!? All you ever want to do is embarrass me and destroy my life!!! Why would you want to do this to me (tears and snot rolling down like a cascading waterfall) Mario's my buddy....he comes over to hang out and play basketball and wrestle-fight and now he knows I need help....(more sobbing)

R: Teddy, come on, Mario loves you.....(I try to rub his back but he pushes my hand aside and continues with his lunatic diatribe!)

T: I can't believe you'd do this to me....what kind of mom are you....all you ever want to do is embarrass me....not Mario, why Mario?!!?!? This is awful (sobbing terror!!). Why M-A-R-I-O??? (ridiculous crying!)

R: Teddy, this is unnecessary....Mario is great and you're going to have such a good time with him

T: Who's the other one?

R: Well, you've met him before...he's come over to the house to do some work with me and we had coffee with him and his girlfriend last week...remember Erik?

T: (screams!) Erik....who the heck is Erik??? I don't know an Erik??? I don't want a total stranger to come tutor me....I only want Mario....make it only be Mario (intensity of crying increases....didn't see that one coming!!)

R: Come on Teddy, Erik will be great. That's what Mario and Erik do....they tutor kids all day and teach them so it's totally natural for them....it's not going to be hard, they're just going to help you get really good at your math facts and reading....

T: But I am better.....I promise I won't tantrum anymore (sobbing, wiping snot from face, eye red, face blotchy, cute freckled nose...I want to kiss him:(.....I know he feels ganged up on...but it has to happen)

R: Teddy you are getting better and I'm proud of you but like Mrs. Checchio said you could use the extra practice....honey you know that you're incredibly smart and lots of kids have tutors...this has nothing to do with me not thinking you're smart....

T: No one has tutors....you just want to embarrass me....this is A-W-F-U-L!!!! (crying intensifies again!) you're such a mean mama!!!

R: Okay Teddy....look there are two choices here....you can either accept that you're going to have tutors and be calm about it or you can fight it and be miserable and make everyone else miserable too. Either way, you're going to have the guys come over.

T: (pauses crying enough to look at me with the stink eye) Fine....but I only want Mario!

R: Buddy, you don't get to give orders. Both of the guys are awesome and you're going to have to well with them both. I'm not talking about this anymore. I'm going downstairs. You can be excused as soon as you're all calm.

Sooo.....the day starts off shitty...and ends shitty....where is my Umpa Lumpa?!?!?