Just Some Random Shit

When I was a girl, my dad taught me about the crocogator; the meanest animal in the whole world. He told me that it had the head of an alligator on one end and the head of a crocodile on the other. Now, whenever I tell this stor,y nobody ever asks what I think is the obvious question about this beast (If he has a head on either end, how does he go to the bathroom?) and the anecdote doesn’t work nearly as well without that prompt. So, imagine you have just asked how the horrible, mean crocogator can possibly go to the bathroom with a head on both ends…. My response would then be, “Well, why do you think he’s so mean?”

Did you know that chemo causes constipation that no amout of laxative can touch? Did you know that the mighty crocogator would be no more scarey than a salamander if he could only take a shit? Seriously.

On 12-10-11, I quit smoking for reals (you know, not just for the morning). It wasn’t as difficult as I thought it would be. I simply had to change everything that I did everyday in order not to put myself in that uncomfortable/dangerous, “Wow, that cigarette smells great.” or, “Damn, I really need a smoke right now.” situation. Since my world was changing so dramatically anyway, and since my job was/is to care for Honey and deal with my own anxiety, and since smoking took me outside where I was neither caring for him nor myself. I was in a great place to change my behavior habits. The only real problem I had with quitting, is that I no longer have a ready excuse to get out of the house when I’m feeling overwhelmed.

I think that smoking cigarettes for nearly the past 30 years is what has allowed me to keep my juniors’-sized figure all this time. Cigarettes are a stimulant and an appetite suppressant. So, smoke’em if you have’em and call it the world’s most effective and addictive diet plan.

Apparently, I have the French genes (not french jeans, that would be too cool). Through my mom, I am a descendant of  both the Taylor and French families. The Taylors tend to be long and lean people; the French are quite petite, but prone to roundness. Pior to being out of work on disability, I was constantly on the move. I would take more than 10,000 steps before 2:00PM. I was very petite, one could argue that I was tiny and be on target. I wore the same sized clothes I had been wearing in college. The dress I married Honey in has been my go-to summer wedding dress for 16 years. I fully realize this pisses some people off.  We all have our issues. Some struggle to lose, some to gain, very few of us seem content right when we are… Anyway, since I have stopped working and smoking, my body is morphing into something that I am totally unsure of. I am eating the same way that I always have, but I am not metabolizing nearly as quickly. I’ve started walking and am trying some yoga and there seems to be less top in my muffin. But now I understand why people wear mom-jeans. They hide a myriad of “flaws”.

With every thing else that is going on in my crazy world, I don’t need to be worrying about my own body image issues. Damn.

I really hurt today. My right toes are numb and I have nerve pain in my neck and shoulders. I have been taking my meds. It might be time to look into upping the dosage of Lyrica. I feel like an ass if I complain though cuz cancer trumps fibromyalgia.

Dear Florida: It’s rather hard to “stand your ground” when you are chasing after someone.

Zimmerman’s co-worker who “defended” him to reporters on MSNBC didn’t help all that much. He readily admits that Z was following Trayvon but asserts that after he caught up to him Trayvon was the aggressor. My ex tried to use that as his excuse for spousal abuse. His claim: I assaulted him (all 98 lbs of piss and vinegar me assaulted his 215 lbs of beer weight) while he was holding me off the ground by my neck. Really? Cuz THAT sounds like self-defense to me. I never know whether to laugh or scream when someone much larger than another claims he or she had to resort to violence to protect themselves. Especially if the littler person is unarmed…..

I honestly don’t believe that any of the Republican candidates running for nomination in the 2012 election has a much of a shot in hell of defeating President Obama come November.

Gingrinch has to drop out of the presidential race pretty soon. I don’t think any other country in the world would be able to take the US seriously if our president was named “Newt”

Although it is unlikely to happen, I do so hope Santorum gets the GOP nomination. Mostly because I think he is absolutely nutters and I am looking forward to hearing Barack Obama bury him in a debate.

We went to Fuddruckers last night for dinner. Had coupons for a $7.00 flat rate combo meal. Love is not going back and demanding that the manager fix your bill when the clerk forgot to take the $2.00 discount off.

I’ve had an inspired idea for if I go before Honey. I am going to get a bunch of clear glass Christmas tree ornaments. You know – the kind that you can put confettie or glitter in? I am going to decorate them with the names of the people who should get them, maybe put a little note inside. Then, all Honey will have to do is funnel some of my ashes into each ornament and hand them out to all of my Darling Hearts. Then my “body” could be reunited with the parts of my heart that I have left along the way.

That is all for now.

Random….

How Honey’s doing/March 2012 update

Honey had his MRI and appointment with DrC Monday night and Tuesday morning of this past week.

I should have updated the blog then. I am sorry for having worried anyone who reads regularly.

(I am speaking directly to my lovely sister and mother-in-law as well as my mom. I know it makes you anxious when I am remiss in calling and/or writing.)

The MRI was at 8:00 Monday night. DrC was Tuesday morning at 8:00. (Have I mentioned that it takes us an hour with no traffic to get to MDA?) Masochistic bastards.

Everything went well enough with his appointments. This was his 31st MRI – if anyone is counting.

It seems that my “feeling” was kinda’ off. Carboplatin/Avastin cocktails seem to be staving off new growth in Blob. It doesn’t appear to be shrinking Blob at all, but I will take status quo over a less pleasant alternative.

I had mentioned before that Honey didn’t experience any tooth pain following his last Carbo/Avastin chemo. I thought this meant that Blob wasn’t shrinking (I do believe I was correct there); I am so relieved that he also doesn’t appear to be growing.

So, chemo was on Wednesday last week. Since forever, chemo has been on Tuesdays – just setting the stage here….

My job, the whole meaning in my world right now is to keep the family schedule. Since I am the only driver in the family, it all falls on me. That means I drive to and pick up T from school, I bring Honey to all his appointments, I pick up G & C whenever they are scheduled to be with us and run any/all errands.

Chemo is supposed to be on Tuesdays. Last week it was on Wednesday. I had no idea how much on autopilot I’ve been moving.

That one change and my world fell apart.

I blew my schedule and couldn’t get it back all week. We were supposed to have our weekly lunch at Chipotle’ with friends on Wednesday noon. That didn’t happen – we blew them off without even a call. They came to pick us up, we weren’t home. I was supposed to be at FPU on Wednesday night; that didn’t happen either. Thursday I fell asleep reading in the afternoon and napped until 3:20 (I usually pick T up at 3:10) so I was late for every other thing all evening. Friday was an early release day for T so that changed things up a bit.

After I picked T up, I went to do my weekly couponing-grocery shopping (because I didn’t get on it earlier in the week). I pulled down my list from Grocery Game, then spent two hours clipping coupons and making sure that I had them in order and “knew” what to do with them. I then proceeded to spend over an hour shopping, getting everything on my list, found the least horrible looking line and checked out. Only problem being (and thank goodness I noticed) was that the sum-total after coupons was not at all in the range I had expected… Clearly I had screwed up yet again.

Rather than harass the clerk, I pushed my happy way over to the customer service desk where we then checked the prices on every item that was supposed to have been on sale. Unfortunately (for me and the customer service rep) the Grocery Game combined last week’s and this week’s Randall’s sale circular. So not fun.

Today is Saturday. I am getting back on track. This is a child-free weekend for us so I have less responsibilities, all I really have to do is clean up the house. Even that seems like too much sometimes.

All it is is a schedule. It is ONLY a schedule. I keep telling myself.

What I feel is that I have dropped all the plates I was spinning. I was not successful at keeping the schedule. I have failed.

I have been chatting recently with a friend from high school about working with children with emotional disturbances. I told her that she need not beat herself up and to remember that EVERY day is a chance to start again. That we can, must really, let go of whatever we are holding onto that prevents us from doing the best that we can by our loved ones.

I talk the good talk.

I am failing to walk the walk.

Does Anybody Know What Time It Is?

Does Anybody Really Care?

Today was kinda’ a freakish day.

Honey is not at his best.

Did you read the post Today from a couple of weeks ago?

The one in which I spoke of the small changes I was seeing in Honey?

The thing is that when he has chemo (carboplatin in particular) he “regains” his cognitive abilities.

This is why (I think) that at our last appointment with DrC at MD Anderson, Blob appeared to be stabilizing.

You see, Honey had gotten carbo just two weeks prior to his MRI and status update. Blob was still under the effects of carbo-poison as it had not yet met its nadir…

Well, it has been coming up on six weeks since he last had chemo.

His platelet count has been on the rise (47, 62, 87) for at least the last two weeks.

He got blood work done again today. I can only guess that his count is somewhere in the neighborhood of 100. We did not get a call scheduling chemo for this afternoon. I wonder if this is because his Red Blood Cell Count is  still low. Honey’s afraid that he has suffered permanent damage to his marrow from the Carbo – seems to make sense. Who knows?

Lately, Honey has been getting upset with me because I am speaking too fast for him. Actually, he says I am pissing him off. This is not the kind of language that he normally uses. I am the potty mouth in this relationship.

I have been having to give him “think time” to process what I say and to put together his responses. My choice of career, my compulsion to work with people who are on the edges of the autistic spectrum, my entire life to this point has guided me to be in the best position to support Honey at this time.  I have been  feeling rather like Owen Meany for this past month or so.

Today, our itinerary included getting Honey’s labs done and then heading to the airport to meet my aunt and uncle for a visit during their 3 hour layover.

Honey was trying to figure out our schedule; what time we were leaving and how long we had before we left. Our conversation went something like this:

H: “What time is it?”

Me: “10:30”

H: “What time are we leaving?”

M: “By 11:15”

H: “What time is it?”

M: “10:30”

H: “How much time do we have before we leave?”

M (staving off tears): “45 minutes, Honey.”

Honey has his BS in Mathematics (you would think it would’ve been English, but he would have had to take a foreign language and that was not on his agenda). He knows how to tell time. He just couldn’t do it today.

SN’s phone was already ringing when I realized that there is nothing to be done today but pray and hope that Honey’s name is being heard in all of the many rooms of our father’s house. Honey is getting an MRI on Monday night. His appointment with DrC and SN is Tuesday morning at 8:00(ish). We will see what they have to say then.

I am feeling weary.

It is late.

Good night, John Boy.

You Take The Good, You Take The Bad….

You take them both and there you have the facts of life, the facts of life

**for every action there is an equal and opposite reaction**

 

Good Things About Cancer

1. Added Soren and Carl to the family as Honey “needed” cats that act like cats to make him happy
2. Have become more comfortable in the kitchen and expanded my cooking portfolio
3. I have so much more time spend with Honey
4. I’ve quit smoking cigarettes
5. I get to spend a goodly amount of time at consignment stores
6. My weight gain went to my boobs and butt first
7. Honey and I are sharing an early retirement while we are both on disability
8. I don’t have to commute to work (gas prices would likely break me)
9. Handicapped parking placard makes the mall experience way more palatable
10. I have grown spiritually through this experience
11. I have had the invaluable experience of learning who my friends are
12. I have plenty of time to be creative and get involved with art of some form
13. I get to take a nap nearly every day
14. My hands and nails are looking mighty fantastic now that I have time to care for them
15. I am caught up on all the shows I follow
16. I get extra alone time with T when I drive him to and from school this has become a nice ritual
17. I have learned that The Baster can still be washed in the kitchen sink (saves >$30 per wash)
18. I have had enough time away from work to stop coloring my hair and discover my natural color
19. Better living through pharmaceuticals
20. So many opportunities to make my own rainbows and search out silver linings.

Bad Things About Cancer

1. Kitty now turned  feral bully at home; even getting pissy with The Baster
2. I now have to cook meals for the picky-eaters club
3. I stress about not having enough time to spend with Honey
4. I now have a muffin-top
5. I’ve gained the weight my mother has been threatening me with for as long as I can remember
6. It costs upwards of $50 to purchase a size 32DDD bra
7. This is not the jet-settin’-old-lady-with-a-way-too-big-RV retirement I had expected
8. I am currently the only driver in the house and my Ford eats gas like its candy
9. Honey can’t walk from the car to the store without losing his breath
10. I have had plenty of time to reflect on the many ways I have been utterly stupid in the past
11. I have had the invaluable experience of learning who my friends are not
12. I have absolutely no motivation
13. I only ever sleep this much if I am depressed
14. It really hurts to scratch an itch with fingernails you have forgotten you have
15. I don’t have any tv series to look forward to this summer when it will be too hot to go outside
16. Parent pick up lines at elementary schools are the worst kind of traffic imaginable
17. Have you ever tried to wash a cat in the sink? Washing The Baster is slightly easier than that.
18. My hair is super gray (well maybe silver is a better name… who’m I kidding? Gray is gray).
19. Dry mouth, fogginess, being tired and weight gain – the side effects of pharmaceuticals
20. So many puddles to stomp through and clouds to walk under

So I’m A Snarky-Self-Involved Bitch. And…?

Honey had a very low energy day (his red blood cell count is down). We really didn’t leave home (or the living room) today.

Honey’s lower back has gone out again. This happened before; right after he got over the hiccups. We should have expected it but didn’t make the connection.

Anyway, Honey was on his way upstairs to our bedroom to sleep (woot). I was following right behind him so I could rub on his back for a while. By the first landing, he was slowing down. Three steps further and I could hear his laborious breathing, he looked as if the very act of carrying his own weight up the stairs was too much for his body to handle. By the time he made it to the upstairs landing it was clear that he was struggling. I didn’t make reference to it, however, because he was completely in the moment and I wanted to be with him right there, at that time rather than back there on the stairs. But boy did I feel like a bad person for getting irritated when he woke me to put the animals out. (FYI: I still feel entirely justified in my feelings regarding the chicken sandwich incident.)

He laid across the bed horizontally while I massaged and kneaded the small of his back. After a bit (probably not nearly long enough, I would never make it as a massage therapist), I draped myself over Honey’s back and settled in to talk with him before bed. I made a point of asking him to please wake me up when he is ready to get up and shower or if the animals need to go out.

It didn’t even occur to me that he was waking me because he couldn’t go downstairs to let the animals out himself. There I was bitchy and nagging at him when he “finally” came downstairs at 9:15 and he just took it. He didn’t say, “Be quiet, you shrew of a woman.” (He doesn’t talk like that…) He said nothing.

He’s pretty good about letting me figure things out on my own. It seems to be the only way I can learn things these days. I really do think that this was the journey we were meant to take with each other… I hope he is able to take away from it as much as know I will. My relationship with Honey has been spiritual since the first day I cornered him at Northwoods and told him he was going to be my painting partner. He truly is the Carl to my Ellie.

At any rate, while I was lying there, I was struck by the ironic, bleak, morose humor of the entire situation and had to laugh. Of course, Honey asked why I was laughing, of course I told him. His response? “Fourteen hours later and you are just getting it?” Me ” I know, my time is getting way better, huh?”

There was a line on the ground there. Did you not see it?

Alternative title: Really, Honey, Really?

Ya know how I said that Honey never complains? Never.

Ya know how I said that sometimes I feel like he is extremely dependent? Extremely.

I think I have found the link that ties these two behaviors together.

It’s me. I am a complete and total enabler. (I’m going to try to explain what I mean so please be patient.)

When I am having fibro pain, I don’t complain because it really doesn’t do any good anyway; it makes me sound like a whiner and puts a damper on whatever we are doing. When I was growing up, the rule to live by was: “the first person to complain ruins it for everyone else.” This was initially introduced as the Disney Land Rule but was applied across the board. Once someone complained we,as a family, would leave where-ever it was we were and go home. Nobody wanted to be that person, so we only fussed when absolutely necessary.

So, Honey never complains.

He lets me know how he is feeling in more subtle ways… He simply can’t do things, he cancels plans (or rather has me cancel for him), he groans, he asks for Tylenol… As I said before, I am generally pretty hip to whatever it is that he is feeling.

Don’t go getting all pissy with me yet – I know he has brain cancer. I realize that he deserves some catering to. Just keep reading…

The other evening (at around 9:30 pm) I was cleaning the kitchen when Honey came in to tell me that since I had made shredded chicken I could now make him sandwiches as that would be an easy meal to prepare…

I asked him if he meant now or for lunch tomorrow and future meals. Honey sweetly replied, “Oh, for lunches and stuff.”

He then turned to me and said (wait for it…..), “Well you can make me one now. Just get out the bread, the chicken and the relish. That should be good.”

I am guessing that he didn’t notice my head spinning 360 degrees or he would have hustled his ass out of my kitchen right quick,

Instead, it was I who left the kitchen. I just walked out – throwing, “If you have the energy to get your lazy ass up off the couch to come in here to tell me how to make your damned sandwich, you certainly have the energy to make it yourself” over my shoulder on the way.

Here is where I made a crucial mistake; instead of going straight to the living room and getting comfortable, I hovered. I tried to help him with the relish and he earned the right to tell me that I was treating him like an idiot. He was right, but that didn’t alleviate any of my pissed-offedness. If anything, it cranked it up a notch. I believe my answer to that was something along the lines of, “I can’t believe the nerve of you! The kitchen is fucking closed! What’s it going to be next? “My Love, I have taken a shit, you can come wipe my ass now.” Really Honey,,,Really?”

Honey quickly realized the err of his ways and apologized for taking advantage. To me, getting a sincere verbal apology is all it usually takes to make me feel better and move on.

And then, this morning, I totally shit you not, he did it again.

We have been sleeping downstairs because Honey has had that nasty cough; him on the couch, me on the recliner (and that, too, is love). Last night was the first time we had slept in our bed in well over a month. I was in a wonderful, beautiful and comfortable sleep like I hadn’t had in quite a while. You know that point in the morning when you could either get up and get the doughnuts or continue to sleep for another hour of more? That was the moment that Honey chose to wake me with a, “My Love, it is time to get up and let the dog and cats out.”  I rolled over, looked at the bedside clock and saw that it was 7:40 am. I panicked because I have to leave to drive T to school at 7:45am. I was out of bed and dressed before I realized that today is Saturday and we are having a child-free weekend.

It is rainy today. Rather a grey day. A perfect day to do absolutely nothing but sleep in, stay in our indoor clothes, watch movies or do whatever we want. Not to get up at fucking 7:40 am. The thing that completely boggles my mind is that he was already awake but thought it would be appropriate to get me up as well. T does that too, but he’s six and he, at least climbs into bed and gives me a cuddle before expecting me to get out of bed.

I am almost off my tirade, give me just one more moment, please.

The culmination of this fiasco was when Honey decided to get up at 9:15 and greet me with perfectly pleasant “Good morning, My Love, boy am I hungry.”

If I don’t take my meds very soon, this will set the tone of the entire day – and that doesn’t bode well for anyone.

The Evolution of Blob

Dear Hearts,

This one is going to be quite a read. It details the history of Blob through my facebook status updates.

Crazy – who needs to journal anymore? Oh, but wait, we do still do that only now its called blogging. Silly me.

I still like giving and receiving “real mail” (you know –> the kind without windows) but for practicality this rocks. I feel a little archaic holding on to my blank books.

Who amongst us has had to tell their children, “when I  was a kid, we didn’t have cable, never-mind internet! And we thought Pong was amazing.”

 May 2011

• 05/25   Ok. Honey’s MRI is today. Lets see what this neurotheology thang has to offer. Please send energy and prayers for a cancer free brain. Thanks so very much. Love you all
• 05/30 Thank you all, my wonderful, wonderful friends (and fam). My birthday was fantastic ~ I basked in the love all day.
• 05/31 Honey’s MRI results: “Blob” has grown 4 mm. It is now large enough to biopsy (1.1 cm) and a referral to a neuro-oncologist is pending. I am now actively soliciting prayers and positive energy. BL has got me pondering neurotheology and I’m wanting to have all our bases covered. Love you guys….

June 2011

• 06/03 Honey’s appointment with neuro-oncologist on 6-15. Thanks for all your prayers and well-wishes. Please keep sending love, we are stockpiling it.
• 06/05 Just wanted to say that with all that is going on, we are doing quite well. Really. We have a great support system, fantastic insurance, awesome friends and family. We are coming at this from a position of strength. Just sayin’….  ♥”
• 06/06 I really like the sentiment on this tee shirt. It seems the importance of hope and faith to well-being keeps coming up lately. Go figure…”
• 06/09 Honey sent me this link. He likes to make me cry.”
• 06/14 Neurosurgeon in the morning. Will let you know what he has to say. Honey says I’m only allowed to ask questions if I use my “nice” voice. Wish me luck… High levels of anxiety don’t lend themselves to successful usage of nice voice.
• 06/15 Anyone who received Honey’s email this morning… he was being snarkey cuz people have been asking how he’s doing. I am fine(ish) Do Not call or email b/c you are concerned about me. I dont have time to reassure you this week. Check back next week if you are still worried. Thanks. Love you. Really. Now kinda leave me alone, okay? Good
•  06/24 Holy Crapamolie! This has got to be the world’s largest marimba – and it plays “Jesu, Joy of Man’s Desiring” Absolutely Fan-freakin-tastic!”
• 06/28 Neuro psych (?) exam and MRI for Honey today, tomorrow is functional MRI and the visit with the neurosurgeon. Remember the Talking Heads song “Road to Nowhere“? Am feeling like we’re on it
• 06/29 Functional MRI done but not read. Contrast MRI showing Blob a little denser, maybe a little bigger. N-surgeon gonna talk w N-oncologist, looks like surgery in the 3rd week of July. Honey is out having a drink. I could use one too
• 06/30 Today, lets all love abundantly and smile with reckless abandon. Lets forget our hurts, our slights and our grudges. Lets do this just for today – and if tommorrow you want to go back to the way you were yesterday – well then at least you had the chance to see what life could be like without carrying around a lot of negative baggage. Lets do this, shall we?

July 2011

• 07/02 It has been more than a month of Sundays (literally) since I have been to a Red Sox game. Thank you, Honey, for getting us tickets. Could only be better if T could come with us. Sad, but not sad enough to not go…
• 07/17 We do not have souls. We are souls; we have bodies. ~ borrowed from Jeffa who saw it some place else entirely ♥
• 07/19 Blob officially renamed Tumor. He will be physically evicted from the premises on Thursday with extensive long term fumigation to follow likely. Appt w exterminator (neuro-surgeon) tomorrow afternoon. Expect updates as we get them
• 07/20 Exterminator not evicting pests. Going to try to control/contain w chemo & will operate when/if physical manifestation of symptoms gets more significant than localized seizures. Kinda like waiting for support walls to collapse before tenting for termites if you ask me, but I’m not the exterminator and nobody asked me.
• 07/23 In Austin for the weekend, vanquishing (sp?) cancer at every turn
• 07/27 Sometimes I wonder if I am motivated by inspiration or if that is just momentum.
• 07/28 Add to the “Fun and Games with Cancer” category: set Honey’s cell alarm to Boogie Go-Go for his noon chemo reminder. Laughing so hard I’m crying. Or something like that
• 07/29 Insurance company denying Honey’s chemo drug. Twice. They say (essentially) that brain cancer is not an approved diagnosis for this drug. We have 5 workdays left to get this cleared up. Nice.

August 2011

• 08/01 Last night we had cool cucumber avocado soup, swiss chard with orange & cranberry and middle eastern chick pea burgers on pita. It all tasted good and I cooked it – thats right, me. …I know, huh?
• 08/03 Carrot & beet salad with citrus dressing, oven fried chicken and couscous with pine nuts. T ate the chicken and told me I was a better cook at our old house. Yah, cuz I was the queen of frying up turkey dogs and driving thru take out. Nice
• 08/06 Are we really down to only a week and a half left of summer vacay for teachers? How did the WHOLE summer get away from me? I’ve gotten tons done, but nothing that was actually “on my list” to do. Life’s like that sometimes, huh?”
• 08/07 Take ahold of your hankie before you watch – the saddest scene on “The Big C”
• 08/09 Today’s the day. Happy Anniversary. One year ago we were in Vegas getting married… Wow – has it ever been a long year. Feels like we’ve crushed a whole lifetime into these past 12 months. Looking forward to what the next 12 months hold in store for us –> I am sure they will be chock full of growing and bonding moments……
• 08/12 Just got a call from a friend @ the grocery store. Lady next to her in line is on chemo & says everything tastes like cardboard. K held up the line while I pulled out #TheCancerFightingKitchenCookbook and quickly referenced the appropriate course of action to remedy said culinary crisis (sea salt &/or lemon) Go, SuperCancerCaregiver, go
•  08/20 Honey admitted to Memorial Hermann The Woodlands. Stroke? Some other cancer related issue? Asking for prayers
•  08/21 Hospital food (including the coffee) apparently sux. Off to Starbucks and What-a-Burger for Honey. Good thing I learned how to cook, huh?”
•  08/21 My fathers house has many rooms (John 14.2) and I am doing all I can to ensure that Morgan’s name is being spoken in each and every one of those rooms. Honey is in good spirits, he is “enjoying” playing with his left arm (which he can’t feel). He tosses it up in the air and says “wheee” when it falls back down to his chest. The Big Jerk
• 08/21  Honey has a lot of his mobility back – just no feeling. Has had his MRI but we’ve not seen results (nor a neuro-surgeon for that matter). It is my expectation that there will be a move to MD Anderson (if not home) within the next very few days
• 08/21 Heads up! It wasnt a stroke. It was a stroke-like physical manifestation of an effect of the tumor. A “TIA” I believe the doctor called it. Something stroke like that last less than 72 hrs. Sorry ~ repeating myself. Sorry… T’s staying at his dad’s place and Big T is bringing him to school tomorrow. Cool, huh? T is excited…. and a little nervous about the possibility of being late…
• 08/22 Honey is home. Watching news talk tv. It’s like nothing ever happened. Such a good thing I was already grey-haired.
• 08/27 Want to get inked tonight. For Honey. Anyone wanna come? After whatever else you have plannef for the evening?

 September 2011

• 09/02 Honeys had another seizure. MRI today. Next MDA appt on Tuesday morning. Other than that, work is frantic and time marches on, time marches on…
• 09/06   Wake up and smell the wild fire, Folks. Prayers to Magnolia and Waller. On our way to MD Anderson for Honeys 6 week check in.
• 09/06   Honey home on disability for at least the upcoming 6 weeks. Give him a call, stop by to say, “hey” (pace yourselves), maybe take him to coffee? Anyway, he’s home and he can’t drive. Thanks Friends.
• 09/15 left-side dead/ as Carpenter ants bore thru gray matter/ chemo going as planned (a Honey original)
• 09/16 Honey lost his left side in another seizure Wednesday evening. Damn, I wish he’d take better care of his stuff.
• 09/16 At St Lukes with Honey. Expect we’ll be here for the duration. Will update as we learn more.
• 09/16 Honey being admitted to St Lukes cuz no beds are available at MDA.  So he’s here in The Woodlands until further notice.
• 09/17 Rep from MDA came by. MRI unchanged. Waiting for oncologist & neurologist to come voice their opinions. Honey in pretty good spirits. Me? I’m exhausted, thanks for asking. ♥
• 09/18 Quote of the day: “damn those fast growing cells – chemo’s kicking me in the balls.” (honey @ 9:40 AM 9/18/11)
• 09/19 Honey should be getting bonus points, the high number of episodes he’s been having… They say he can come home if her can go 24 hrs without a seizure. Fingers are crossed.
• 09/19 Trying yet another med for seizure control. (cuz thats been working so far) When Honey can go 24 hrs w/o incident, he can come home.
• 09/19 Found out Honey “forewarned” the ICU staff about his colorful wife and her anxiety…. And here I was all impressed w my ability to not totally alienate these people…. Nice
• 09/20 At home getting T off for the bus (1st morning catching it and we had to RUN ** some things never change **). Now to find my glasses and head back to ICU. If Honey goes just until his neurologist shows up without incident – he can come home today.
• 09/20 Home again, Home again. Jiggety jig. Left L’hotel Ste Luc about an hour ago. Settling back into our own space. Must retrieve The Baster from The Dozer’s place. Thanks, All, for the hope, prayers and visits. You are soooo appreciated!
• 09/22 Honey’s back went out this morning.He has an appointment for a 90 min massage in an hour. I have an appointment for a 60 minute nap coming up in about an hour and 10 minutes.
• 09/22 Ambulance w Honey in it just pulling away. Waiting for T’s bus, then back to l’hotel Ste Luc. Woot.
• 09/22 Honey given 10mg of knock-ya-off-your-ass pain meds. Off to x-ray. Hoping this pic is suitable for framing…
• 09/22 Xray didn’t show anything of any consequence. Honey given Flexeril and Norco 10 (I know, huh?!?) enough to last 4 days. If back still bothersome in 3 days ER doc said get MRI. Think I’ma call MDA tomorrow just to be on the safe(r) side…
• 09/25 Honey still immobilized. You’d think that would make my life easier….. Calling MDA tomorrow to schedule an MRI. Hoping this is just a really badly pulled something-or-other. Kinda worried it might be something more. Good thoughts/prayers are still much appreciated.
• 09/27 This is a test. This is only a test. If this were an actual emergency you would already be caught up in the mass panic. #justsayin

October 2011

• 10/18   I know I should love #chemo and hate the cancer, but sometimes #ChemoSucks as much as #Cancersucks. But I love Honey, so #KickItChemo
• 10/20  Waiting in dr’s exam room, Wondering where life’s music is. (Status usurped by Honey)
• 10/25  All is not well in Gotham City. The evil menace continues to grow despite our hero’s valiant attempts to conquere the beast. The commissioner has requested the assistance of The Forces United to Kill Cancer (FUKC). Tune in next week as Aqua Man and Super Man team up to take on the Mutant Lesion and the Swollen Edima – IN THE RING-ING-ing-ng
• 10/30 We interrupt your regularly scheduled Sunday for this important announcement: cancer doesn’t care if the Texans are in the lead. Cancer lives in the NOW!
• 10/31 Anger is so much easier than sadness.  #justsayin #cancersucks

November 2011

• 11/01 First day, new #chemo (#Avastin) at #MDATheWoodlands. Fingers crossed that Honey is in the 2/3 of people this works for. #cancersucks #MDA #nuuc
• 11/02 Honey had a headache. I think its a brainache. Waiting (not so) patiently for chemo to shrink swelling. And yes, #cancersucks today too.
• 11/29 Very positive appt w neuro-oncologist today. Swelling in edema down, lesion appears significantly decreased in mass. Thanks guys, we didnt do this alone. Your prayers helped so much.

December 2011

• 12/07 Honey’s #PlateletCount is finally trending up. At 36 right now. Must be at 100 to get next round of #chemo.
• 12/08 Sometimes it is difficult to accept that the life I imagined is not the one I’ve got. Adapting isn’t easy.  #WakeUpAndSmellTheRoses
• 12/13 Honey had 2 seizures today. Didn’t think we’d travel the same path back to ok. 1st was 10 min. Almost 2 hrs into 2nd. @northwoodsuu
• 12/14 Still actively searching for Honey’s left side. No mobility this morning. Screw the platelets, bring on the #chemo cuz #cancersucks
• 12/14 Just realized I am gonna have to help Honey get changed for his MRI. This is the very definition of love. #cancersucks
• 12/14 Honey in MRI. Still has no mobility on his left side. Got an hour to wait. Maybe I should move the car to a lot less than a mile away…
• 12/15 Funny, when Honey is trying to use his left hand to do anything, I find myself talking to him as if he is 2. #tbi #cancersucks
• 12/16 Honey’s in for a rude awakening. Platelets back up to 99. No more cutting his food for him.  He can shave again. Still waiting for dr. to show. Been in the little room after the waiting room for 2 1/2 hours now
• 12/16 Chemo on Monday. 25% lower dose. MRI shows growth in Blob. Aggressive Bastard, Blob is now at #stage4. #cancersucks #Honey @northwoodsuu
• 12/23 Look what I found! Felt the need to look & this was waiting for me. #FourLeafClover #MaybeThere’sHope http://t.co/1pDorywp
• 12/23 Okay, new rule: do you remember Kenny’s fb note about what is needed in a in a time of mourning? It applies to crisises too. Don’t wait for me to get in touch w you, you need to call/text/show up, whatever but dont wait for me to take the initiative. I can’t right now. But that doesn’t mean I dont want to. I need you to step up, please
• 12/26 We had the best Christmas ever so far. All three kids, nobody cried (cuz they were upset), gifts totally appreciated (apparently I chose well this year), Honey able to join us for the entire day – (he was misserable, but he stuck it out) – and the kids have this memory to hold on to.

January 2012

• 01/02 We’re a go for Avastin. No carboplatin this time
• 01/10 #CancerHoeDown ~ Grab ur pardner, jump in line. Take 2 steps frwd and 1 behind. Hold’em close & do-si-do, #ChemoWorks but #PlateletsLow
• 01/10 Blob again looking fit and trim. But 1/2 life of carboplatin is not in sync w nadir of platelet production. (look it up) Dropping next dose of carboplatin another 10% & more bloodwork on Friday
• 01/16 Thx 4 offers 2 donate platelets for Honey. Talking w MDAnderson tomorrow. Will let you know more when I do. Sorry for whining yesterday.
• 01/21 Reading article on cost of #LongTermCare for #cancer. Death doesn’t care about med. bills or insurance. Why do I do this to myself?
• 01/21 Dear Hearts, Honey is not in need of platelets at this time. However – MDA and other hospitals are ALWAYS short platelets. They do not have to be of any particular bloodtype – but if you are willing to donate – go to any red cross/blood bank ask if the platelets can go to MDA or where they are likely to go if not there. I am pretty sure if we pay this one forward, karma will provide platelets when/if we are need
• 01/24 Avastin today. More blood-letting on Fri then hoping for #Carboplatin on Mon. #GoChemoKickCancersButt
• 01/31 Newly adopted twins, Soren & Carl. Morgan wanted some of “his own” babies. The things I do for love. http://twitpic.com/8e48zk

February 2012

• 02/04 FYI: Honeys platelet count dropped 14 pts from 111 to 97. No carboplatin last week. Hoping for the 7th.
• 02/08 I am surrounded by the sick (T has a cold) and weak (Honey got a double dose of chemo yesterday – Woot!!). This is so not what I thought my “retirement” would be. But still comfortable to have both my main Y-chromosones home for an “indoor clothes” kind of a day.
• 02/25 new blog post. “Pulling The Rug Out From Under Me or No Shit, This Is For Real” www.pardonmychemobrainbyproxy.wordpress.com
• 02/26 8:16 AM on Sunday morning. Already awake after only 5 hours of intermittant sleep. Off to forage for coffee and kolaches. Wish me luck.
• 02/26 Brain Cancer trumps Fibromyalgia (every time)

March 2012

• 03/04 Have you checked out Honey’s book? It is a compilation of his poetry representative of his 20s. Very cool. http://www.blurb.com/bookstore/detail/2902974
• 03/08 Blood work done Tuesday. RBC levels down (marrow damage from carboplatin?) Platelet count at 47. More blood today to see if he is trending up or down. I suspect down…

Tell me how you feel, damn it!

Just so you know, Honey does not complain. Ever. He is also a poor judge of his pain levels. When he was in the ER having seizures with migraine, he said he was a 4 out of 10 but it took morphine to get him functional. I had to draw him up a pain chart.

1 = hmm, I am feeling the beginning of something here

2 = I think I might need to lie down

3 = don’t talk to me. don’t touch me. call SN (super nurse) for advice.

4 = ER. I need the ER now. There is no drug in this house that can begin to touch this

5 = death would be a welcome respite from this

Because he does not complain, I have to ask him specifically and judge how he is doing by his mood and behavior. That sounds something like this:

How are you doing this morning? How is your body feeling? How are you doing emotionally?

He usually says he is doing well, that he is in good spirits. Now that he is taking Concerta, his apathy has lessened and this is very good.

The thing is, I don’t really believe him. He tries to protect me so that I don’t get more depressed.

He is weary. He is tired. The side effects from his anti-seizure meds cause an ugly cycle that includes horrible GERD that makes him cough so much that he doubles over in pain. This is followed by a case of hic-cups that lasts at least three days.

Another negative aspect of his lack of complaint is that I occasionally think he is being extremely dependent. Well – check that – he IS extremely dependent, but I find myself thinking he is going to look at me one day and say, “Ha, I fooled you. Wow you tucked me in when I slept. I got you to put my socks and shoes on me and you even took up cooking for me. You really do love me…”

But I know that’s not going to happen.

He really is too tired to walk the 5 minutes to get to Randall’s. He really is crying when he coughs.He really does need to be tucked in when he is resting on the couch. He really is sick but he refuses to acknowledge it. How could I think that he is pulling my leg? I guess because if he is – I’m not going to lose him.

Last night, he had a dream that he was in hospice. I was there and he was using sign language to communicate with me as he had a tube in his throat.

I wish so much that this was just a colossal karmic joke.

Oh, wait, it is, isn’t it?

today

and maybe this past week, actually.

Honey is not doing all that well.

If you didn’t know better, you wouldn’t think too much of it.

He is struggling to understand things. Simple things. Like why I want to buy a toilet and pay a friend to install it rather than pay $175 for the commode and an additional $350 for the service call with a licensed plumber. Or that when I say that we had lunch only 2 1/2 hours ago it doesn’t mean I am getting up to cook dinner at that moment.

He is tired. Weary.

HIs patience is short. I have been having to run interference between all the men-folk in my world. Reminding the kids that he doesn’t mean to be cranky, he’s just tired. He tries to stay awake the entire day when G & C are over and it is too much for him. He wants to squeeze every minute of quality time with his children as possible. He wants to build a life time of memories yesterday. Ya’know?

He is forgetting things. Short term kinda stuff. I have to remind him of things like the day or date, our schedule for the day/week or whether or not we have already eaten or not.

He is having panic attacks if I leave him for any significant amount of time (like for grocery shopping) or if he can’t get in touch with me right away. Did I mention the day that I “abandoned” him at the doctor’s office? I ran to do an errand while he got labs done. He got out super early and didn’t have his phone. Not a big deal,normally. However, this time the nurse at the clinic was having her own bad day and was short with Honey when he asked if he could call me from the office phone. He couldn’t remember my number and couldn’t get ahold of me and couldn’t think to the next step of asking the receptionist to help him. (Granted, she was a prize-winning bitch, but still…)

He knows the carbo isn’t working the way it should this time. It just makes sense that Blob would learn a way around the chemo – he is, after all, a brain tumor, Remember when I mentioned Honey’s broken tooth? (I told you before that there would be a test on this – here it is.) Honey broke his first molar while he was still on oral chemo. I was concerned b/c he can’t get it fixed or pulled while on chemo. I thought he would be cutting (or at least bothering) his tongue on the stump. Not so. I thought it would really hurt… but he was none the worse. Then, when he began taking IV chemo – his schedule was supposed to go something like this:

week one: avastin and carbo

week three: just avastin

week five: avastin and carbo

week seven: avastin only (see the pattern?)

Well, things don’t often work out the way we expect they will, rather they work out the way they work out.

Honey’s platelet count was so long in reaching its nadir and returning to a level appropriate to deliver another round of carbo that he has only had three doses since November. This is way less than the number he should have received given our initial schedule…

(Tooth I remember). About two or three weeks after getting carbo, his tooth really started hurting. It continued to hurt until just after his November MRI when the pain abated rather quickly. Shortly (like days) after the tooth pain went away, the seizures started again and we got pulled back down town for another MRI (this was the one that showed huge regrowth in that short amount of time). Chemo (carbo) dosage was dropped by 25% to try to get the poison half-life and platelet nadir to synch up – thus controlling Blob.

2nd carbo/avastin around the 3rd week in December. Again, Honey’s tooth began to hurt almost as soon as they unplugged his IV. His face got swollen and it HURT. Again, they treated him with Tylenol and warm wishes. His pain lasted about a week and then went away.

By now, I am convinced that there is a connection between getting carboplatin and his tooth pain. I am near to positive that when Blob shrinks, he releases pressure on that part of the brain that controls dull pain – so he feels the broken tooth pain. When the pain goes away, I “know” that Blob is growing again.

We had another regularly scheduled MRI two weeks ago on Monday; meeting with oncologist on Tuesday. Blob looked just about the same as he did in the MRI taken six weeks prior. Oncologist thinks this means Blob has stabilized. I say he is full of shit. I think Blob has already shrunken and regrown. The doctors are looking at one moment in time – I am with him near to every minute of every day.

After this most recent administration of carbo/avastin (when his dosage was dropped another 10% in another attempt to synch things up), Honey’s tooth didn’t hurt. Not at all. But what I “know” isn’t going to make everything better. I want him in for another MRI today so another new treatment can be introduced. I may be being extreme or emotional about this – working on feelings as opposed to facts – but that is what I have to work with.

I am scared. I don’t know how I am doing. I know that although I am going stir crazy, I am afraid to leave him alone because I am worried that he will forget where I’ve gone or think that he has been abandoned again. It breaks my heart to see him this way. He is a poet. His work, Fractured Soul has been published (thanks Uncle Hank) and now he can’t problem solve…

His best time of the week is when G & C are here, yet he doesn’t have the energy to do more with them than cuddle up on the couch and watch movies or play computer games. On the plus side, C has started to demonstrate more of an emotional attachment to his dad. (That’s another story for another day when it isn’t 2:36 AM.)

Luv yer guts