The Birthday Song

this song has been tearing around my head all day
(cuz it is my actual-for-reals birthday today)
and it seems particularly appropriate given the circumstances of this past year

Well, let me know what you think.

Love you (and Arrogant Worms)

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Playing the Cancer Card

I woke up on the couch this morning with a killer migraine. Drank some water, vomited and then went upstairs to sleep until 2:30 this afternoon.

It’s now 3:00 AM and I am sitting here watching season 2 of The Big C.

Odds are good that I am going to be up for quite a while now. Seems a good time to check in.

I’ve been meaning to  get around to talking about playing the cancer card. In the beginning, when Honey first came out of remission, his cancer was the only thing that I could even begin to focus on. I would introduce myself to people like this,”Hi, my name’s Jenn and my husband has brain cancer.” or I might let slip with something like this, “Yeah, I liked that book. Did I tell you my husband has brain cancer?”

I am better now, but I think that may have more to do with the fact that I’ve told everyone and their brother about Blob rather than having anything to do with my becoming more acclimated to the cancer or anything.

Anyway, the cancer card is only supposed to be drug out for dire emergencies, like getting the last doughnut or as an excuse for being late for work. Since I am not going to work now I haven’t had any real opportunities to pull it out. Sad…

However, last week, at the Northwoods rummage sale, I totally had someone hand me that chance on a silver platter. (I love it when that happens.)

There’s a new guy at church. Actually, there are two new (single) guys but this story is only relates to one of them, so…  New guy, church, rummage sale (and man, did we have lots of good stuff to rummage through). Amidst all the other wonderful junk was a new(ish) walker. You know the kind that comes equipped  with hand brakes and a seat?

So, there I am, checking out the walker when New Guy comes around and says that HE should buy it quickly before someone else comes along and grabs it. I told him that I had dibs on the walker and, Silly Man, he said that he expected he would need it way before I will.

I’m telling ya, that’s like throwing down the gauntlet. I couldn’t help but take up the challenge. I asked him to tell me why he thought he might have a greater need than I and he started in on how his dad had diabetes and something something arthritis something something else. I let him go for a little bit and then said, “Hmmm, really? Cuz my husband has brain cancer.” He stuttered a little and backed off the walker as another one of our church family members started scolding me about how blah this is not supposed to be a contest blah-blah

But guess who took the walker home.

Love you (and winning)

PS  ~ All the best of what didn’t sell last week is available for purchase in the garden room today. Check it out.

I would imagine that with the million stations that cable can bring into our homes, there are probably a good handful of programs that have cancer-related story-lines at any given time. The two that I am following now are House and The Big C.  I’ve been watching House since its inception eight seasons ago. With all my crazy health issues (recently diagnosed Fibromyalgia and food allergies) I used to wish for my own Dr. House on a fairly regular basis. I am not at all put off by his abrasive personality; I grew up on Cape Cod, Gregory House is mild in comparison to some of folk I was raised up with. (I have also  had a celebrity crush on Hugh Laurie since I first saw the Black Adder series – so that doesn’t hurt matters any at all.)

If you are not familiar with the program, The Big C is a Showtime series that is currently in its 3rd season. It details the life of Cathy Jamison (Laura Linney) as she adapts to living with stage IV melanoma. In its first season, Cathy, who has decided not to undergo treatment for her cancer,   re-evaluates all aspects of her life through the view of a person with a very limited amount of time to live. She keeps her diagnosis to herself and tries to grab the life that she has left and live it to its fullest. All the while, her family, her life, her world fall to chaos.  As the series progresses, Cathy comes clean with her family, decides she has to fight (if not for herself then at least for her child) and gets in on a clinical trial.

One of my besties-from-high-school’s husband is a writer on the show, she recently face-booked that they just had the third season wrap party. So, I know Cathy is going to have at least one more year of fighting – maybe more… I looked at the website and noticed that the last episode is a season finale, not a series finale, so I am going with the notion that she will have at least another year to fight.

Although it is about a very serious topic, The Big C is at its core a comedy. Granted, it uses gallows humor, but I love that Cathy is able to laugh about her situation.

Honey and I tend to laugh through our tears (when we can). We begin every day knowing that our time may be limited and that we’d best make every moment count. I love that The Big C can speak to that aspect of being a survivor.

House, on the other hand, provides us with a more serious, dramatic cancer experience. House’s best friend of 20 years (James Wilson, ironically the head of the hospital’s oncology department) is diagnosed with stage 2 thymoma cancer. Surgery is not possible unless the tumor is shrunken, but the chemo that may shrink the tumor will be absolutely debilitating. We have certainly been there – hardest thing so far has been hearing that no reputable surgeon would operate to remove Blob – that doing so would only maybe give him five more months to live. Ouch.

I’ve gotta tell ya, the episode that aired this week (Post Mortem) was a doosie. Wilson struggles to make choices about exactly how he wants to deal with his cancer. He knows that he only has a handful of months left to live without treatment and likely won’t have much longer if he undergoes the chemo treatment. The only for-certain is that chemo will damn near to kill him in the process of destroying the cancer.

The concepts of dying with dignity, of not fighting the cancer are addressed with painful honesty.  These are ideas that physically hurt the soul and awaken the awkward selfishness we feel when someone close to us is ill and we want them to be better because it hurts us to think of losing them. Watching House and Wilson confront their individual crises was like watching the last year of our lives all over again in just 43 minutes.

Honey has never suggested not getting treatment. I am sure that the idea has floated around in his mind, but at the core of his being he wants to live. He is experiencing all the negative side-effects of chemo (except losing his hair). He hurts, he can’t keep food down, he can’t sleep when he wants to, but is exhausted when he wants to be alert, his digestive system in wrecking havoc with him. But, his desire to see his children reach their milestones is significantly bigger than the pain. Four years ago, he was sure he wouldn’t  live to see C graduate from kindergarten. Didn’t he surprise us all?

Next month, Honey will meet a major milestone of his own. He will officially be a five-year survivor of GBM. Woot.

Lets have a little party for ourselves.

Seriously.

The C Word

That driving thang.

Okay. I have meant to tell you about the whole driving thang since, like, I dunno, February, maybe?

It is an issue that we have been dealing with since last September.

If you check back to L’hotel St Luc and The Evolution of Blob  you can revisit our fantastic foray into the wonderful world of TIA (localized seizure mimicking stroke related to brain cancer). Honey started getting them in late July/early August and in the beginning,  they were really very scary. The first time we saw a significant seizure, Honey was out with the boys. They couldn’t reach me on the phone and had to call a friend to come take care of them and bring them home.

Honey was going on like it was no big deal – just another stage in the process.

Until he couldn’t go to work because of them. What kept him out of work initially was the fact that he literally could not go because he was admitted to ICU. After that, it was that his shrew of a current wife wouldn’t let him drive to work (the bitch).

Texas state law bans driving for at least six months following any seizure activity. (note: I did not say following “grande mal”  seizures). Honey had regular seizure activity clear up to early November. His most recent seizure (that I am aware of) was in mid-December.

So, Honey had not driven his-own-self anywhere since early September.

He has been far more patient than I could ever imagine being if it were my wings that were clipped.

You know that this story is going somewhere, right?

Well, in the end of March, Honey started making noise about how much more convenient things are going to be for me when he can pick up the boys or drive one of the two to school Wednesday mornings so that I don’t have to be rushed.

I ignored him. Thought if I didn’t engage in the conversation, he might forget….

I wasn’t that lucky.

About two weeks later on the day I was scheduled to go to a seminar for caregivers, Honey decided to tell me that he was going to be taking the boys to the grocery store so G could sell Boy Scout Coupons. Of course he tells me as I am on my way out the door thinking that I would be less likely to go off like a bottle rocket if I were pressed for time. (Dumb ass)

I stayed long enough to bitch about some people’s lack of consideration, grab all of the car keys and make arrangements for someone to drive them to the grocery.

The following week, the topic came up again. Again, I expressed concern {okay, I really probably snapped something along the lines of he could kill himself if he felt the need, but that I wouldn’t let him put anyone else in jeopardy simply because he wants to get his way.  (I have already admitted my bitchiness, I am actually that self-aware.)}

Honey walked out of the room and then turned around, came back and asked if I was REALLY going to try to prevent him from driving EVEN THOUGH his last seizure was six months ago.

I responded, yes, that was exactly what I was telling him. He was not going to be driving until he was in actual remission because we simply don’t know what Blob has in store for him at any given time.

Man,he was pissed with me for a while following this episode….

Well now, life is all about growth and I suppose I have been in a constant state of both evaluation and evolution regarding my relationship with Honey’s cancer.

After his most recent MRI (the third in a row in which Blob has not shown any significant change), I told Honey that if he needed to drive, he could take my car (automatic transmission) but that he absolutely could not take any passengers with him. I told him that I expected him to be honest both with me and himself and admit if he is not in an okay state to be driving.

Later that same day, Honey asked me to run an errand with him as he was feeling unbalanced and didn’t think he would be a safe driver.

Totally admire his honesty, but it doesn’t get much more ironic than that.

So, when I realized Honey wasn’t here when I woke up Sunday morning, I experienced a twinge of concern at the amount of time he had been out. But I’ll tell you what, those Dunkin Doughnuts tasted even better because he used his first excursion out to get them for me.

How thoughtful is that?

Love you (and not having to be the bad guy this time)

My Perfect Mother’s Day

…actually started Saturday night when Honey and I hunkered down to catch up on the last few episodes of House.

I’m not sure which one of us fell asleep first, but that’s probably means I did…

At any rate, I slept great and was awoken (the first time) by a kiss from my son at 6:47 this morning. Sweet.

The second time he woke me up was an hour later when he was hungry for breakfast. Not so sweet…

I should have known then that something was amiss. Honey usually keeps T from waking my weekend sleepy self until at least 8:30…

I probably would have zone-walked to the kitchen, made my locally famous carnation instant breakfast and gone right back to sleep had I not noticed Honey’s obvious absence from the sofa.

I asked T if he knew where Honey had gone; his response, “out.”

Ummm yeah, thanks.

I went outside to pick up the paper (and check for Honey) and noticed that my car was missing from the street.

I breathed a major sigh of relief because the Ford is a very heavy, gas guzzling automatic and I knew that, at the very least, Honey would be safe while out and about. I figured he had gone to get Starbuck’s and was anticipating some coffee and banana bread (standard Sunday fare) when he returned.

I was settling in to reclaim some of my Sunday morning z’s when Honey came in the door with Dunkin’ Doughnuts! For me!

Bliss…

He had driven all the way to 1960 to get them. Granted, it is only about 20 minutes from home, but that’s way outside our normal travel radius.

He got me 2 apple and 2 lemon filled.

This may have been the most thoughtful gift I’ve ever received.

He loves me that much.

Then, T accompanied me to church this morning and actually went to children’s worship. This almost never happens – he usually wants to stay for the sermon which doesn’t bother me unduly, but it was great to not have anything to focus on during the sermon except the sermon.

The Mother’s Day God(ess) was showering me with the love this morning.

Then, as I sat down to write, Soren came over to sprawl out on the right side of the laptop, then (you won’t believe this, but) THEN Kitty climbed on up on the recliner to sleep on my other side. (I know, huh? Crazy.)

There has been no arguing or crying by any of the mammals in my home today (two or four-legged).

I always thought my mom was being silly or off-the-cuff when she would say that all she wanted for Mother’s Day was good kids. Now I totally understand the awesome wonder of a day of filled with peace.

Love you (and lazy Sundays)

* belay that– Kitty just realized Soren was here and the fur hit the fan….

It was nice while it lasted.

Another Cancer Update ~ early May

I hate it when people ignore their blogs. I never think that folks might be busy, I automatically go to a glass half empty place… (trampled by a herd of elephants trying to escape the mouse conference)

Luckily, there is no worse case scenario here. I was simply unable to get on my lap top from Friday night til now.

It was a family weekend. All three boys were playing Wizards 101 online. They were actually playing well together (G on the desktop, T on the laptop, and C moving between the two of them) It was such a peaceful change of events that I was loath to interrupt their good time.

Spock taught us that “The good of the many outweighs the good of the few.”  This is true especially if “the many” are children and “the few” is an adult who has only one nerve left and who’s children are dancing upon two.

Honey had his most recent MRI and check in last week on Monday. His sister, GG took him downtown for his MRI.  On Tuesday we all three went together to visit DrC, his neuro-oncolost.

So, DrC was talking with us, explaining the recent MRI results as compared to the previous images.

It seems that Blob has met a wall of sorts. He has been fairly stabilized for the past four MRIs and that is good. It appears  that the establishment has finally found the best dosage combination of carbo and avastin to stop Blob’s growth.

There is a bit of a wrench in the works however.We have known from the get go that Honey can only take carbo up to 13 times as it destroys bone marrow after that. He is up to his 7th (?) go-round with it. I am a little bit anxious to see what will be next after carbo…

DrC informed us that he has another immediate plan to get at Blob. Honey will be taking a double dose of an antibiotic daily in conjunction with his chemo. Apparently, the antibiotic works with the avastin to do something beneficial to Honey and bad for the cancer.

The conversation in the consult room went something like this:

Me: So how long have they been using this antibiotic to treat cancer?

DrC: They haven’t

Me: So who discovered that it would be beneficial to supplement chemo with antibiotic?

DrC: Me.

Me: Oh

Me: Does this mean that his birth control may be jeopardized?

DrC: Huh? Wha? Oh. (chuckle)

Honey (after the fact) :You know, he works here for a reason… He can do that because he is an  absolute researching genius.

So, I’m off to buy some probiotics for Honey in the hopes that I can keep him, his flora and fauna balanced and as healthy as possible in the face of all of this other stuff.

Have I told you before that

We have been very lucky and

We have been truly blessed.

Love you (and DrC)

~ Me