the waiting game

here i sit waiting for the gas man at friends house.

here i sit waiting…..

waiting….

and

waiting.

i have also been processing

it took longer than usual this time

dont think im done yet

but needing to see the words.

ya know what i mean

we last went to mda a month ago yesterday

the mri indicated that blob was exerting control again

the bastard

you already know this cuz you saw the link to the surgeons trial so…

since this time last month

we have been in limbo

waiting.

waiting for news of fda approval

waiting to hear if honey is approved for phase 2

waiting for the chemo drugs to be completely out of his system

just waiting

 

three weeks ago now big corporation

henceforth bigc

told him that they were going to remove him from employee roster

because he cannot return to his old position any time soon

this is fair

and i dont blame the bearer of hard news

but that doesnt mean i dont want to smack her upside the head

damn

if honey loses his job

he loses employee insurance

except as a cobra recipient

we cant afford cobra

and it is not yet 2014

so insurance companies arent obligated to cover preexisting conditions

we had a week to figure out what we were going to do

we still had at least 2 weeks of waiting

left on the fda approval

then waiting for honeys ok

but hr at bigc were only willing to wait 1 week.

we have temporarily put this problem on hold

as hr is looking at finding a job he can do from home

which is fine

except bigc provides our cable and wifi

which goes out every day between 12 and 3 or 4

silly silly silly

and waiting some more

so it has been about 10 weeks

since honey has gotten chemo

he still takes anti seizure meds and antibiotics

he has been losing weight

a lot

he tires so easily.

he has been angry

i dont know if its life and work scares

or if blob has begun to affect him that way

he still composes.

he has been blasting out poems like crazy

he has been going to writers group

and trivia night.

he goes to the movies at least once a week

and he tries to hide

his pain from me

he has been having headaches lately

the pressure behind his eyes is severe

he has had various frozen fruit and berries

as icepacks on his forehead

 

have spoken to sn about this.

earlier today

she will talking w the nurse practioner

and get back to me

cuz drc is out of town

til the 14th

 

looks like the gas man is here

please pardon typoes

this was written on my phone

love you but not waiting

me

Enemy Of My Enemy

I was looking at some ABTA information….

Y’all have been asking about this virus thing and Honey’s getting referred back to the neuro-surgeon and all sorts of things that I didin’t really address all that well in the August six-week check in.

To that end, I have found a very recent news-clip that pretty much explains what is happening here right about now. (give this a coupla’ moments to synch-up before viewing)

We are waiting to see if the FDA will approve Phase Two and if Honey is a good candidate for it.

From what DrC has told us, DrL’s “treatment” is the only thing that has shown to be curative of GBM in mice. Every treatment available prior to this was palliative only.

So, fingers crossed for all to happen in good time and in good health.

Love you (and MD Anderson Cancer Center)

*oh, hey, I tried to link this video two different ways – pretty sure at least one will work.

August 6-Week Checkup

Alternate title: Change Can Be Scary

Friday last, our family of five went on a trek to MDAnderson the Cancer Center for  Honey’s MRI reading with his neuro-oncologist. That might not sound all that much fun to some of you, but let me assure you that the ride was darned near to perfect considering that we are currently doing all of our travelling in a Toyota Echo with no air con and no radio. I think I had this car on Guam once already – only it was disguised as a Mitsubishi Mirage then.

My plan was that Honey get the boys checked in at the information desk and then wait for me to arrive; at which point, we would take the children to childcare at MDAnderson while we (the grown ups) went to the actual doctor’s appointment for Honey’s status update and to discuss any change in symptoms or treatment plan.

When I got to the main lobby, the receptionist remembered my family – now I’m thinking that this may just sound promising so I threw out the old, “Do you know if he took them to childcare?” Well, that volunteer was just so sweet when she told me that the brain and spine center was one of the few places above ground level that will allow children that I decided not to dope smack her right then and there. She didn’t know that I did not want the boys there – and Honey can’t quite wrap his mind around why I feel this way.

So, off I went to the Brain and Spine center. Elevator B, Floor 7 and I was dumped right there. No walking, very little waiting.

Now, here I feel a little more in my element. We have a relationship with the folk who work here. They remember us and they make us feel like they really do care. And that is super important. They laugh at our gallows humor – Honey has been seeing them for 37 MRIs now. He’s been with them for longer than he has been with me (not jealous – just sayin).

So, when they said something along the lines of, “Oh – here’s Ms.SG.” I was fairly confident that she had seen my family wandering about somewhere.

I asked if Honey and the boys had come by that-a-way. When she replied in the affirmative, I was feeling pretty good about myself and my problem solving skills. (woot. way to go jenn, go jenn) I turned around to join them in the waiting area, but again could not find my family (and it really is hard to misplace those red-headed step-children of mine). So, I asked again where they might be only to again get the same response that they may have gone “over there”.

(wanna let you know right here that I had been out of prozac for almost a week at this point – there was definitely the potential for fur to fly)

Finally, SuperNurse came to the waiting area from the behind the locked doors section of private cubicles for patient waiting and brought me in to join the Y-chromosones.

Thankfully I had the forethought to bring electronic distractions or else I may have had to resort to muzzling and hog-tying them with duct-tape.

First thing, we always see SN for weigh in and basic pre-meeting questions related to expected ways that Blob can present if he grows (I guess).

Then we see the fellow of the semester. Always a treat to see a new face.

The fellows also ask pre-oncologist questions. She had him walk heel-toe, remember three words, touch his fingers to his nose and  wiggle his hands. He wasn’t very good at the whole hand wiggling thing – but it could be (WAY) worse. I kinda hate to admit that this fellow annoyed the crap out of me (I seriously try to maintain good relationship with MD Anderson staff – they literally hold Honey’s fate in their hands…) This one though, was not paying attention to me when I was trying to (sublty) tell her that  Honey either doesn’t remember or simply downplays all physical manifestations of his cancer. If he says he’s kinda getting some headaches, not many, you know – that means every time he exerts himself, every time he leans forward, every time the sunlight is too bright; every time the kids are rambunctious (read: being kids) he gets a headache. Honey tries so hard not to complain, but until the headaches get really bad – he can only take Tylenol (all other OTCs are blood thinners. His platelet count is already low – sucks to be him). So this brandy-spankin-new fellow comes in and suggests that he not take Tylenol if he can possibly do fucking without it. “Excuse me, Bitch? He has a fucking tumor in his brain – try not to take Tylenol b/c he can become addicted? Are you shitting me? … then give him a prescription and grow some common sense, because I think becoming addicted to Tylenol is probably one of the least significant things we need to focus on at this point of our journey.”

But, because I had children in the room, I just thought all these things. Really EMPHATICALLY and really LOUDLY inside my own head.

The fellow did show me and the kids Honey’s current MRI as compared to the last one. This actually placated me some as  I hadn’t gotten to see his films the last time we were there. This made me unpleased however b/c there was change in blob and I really, really did not want to have the boys there to begin with; certainly didn’t want them to be there for less than positive news, but there is nothing to be done for that now.

When the Amazing DrC came in, he explained a bit more about what he and the radiologist are seeing in the MRI. Something, something dense; something, something more defined; something, something different…

Great.

So, we are then informed that Honey can’t get anymore carboplatin as he has maxed out on that. DrC is going to have SN try to make an appointment with the same surgeon Honey saw last summer. You know, the one who wouldn’t operate on Honey because it would only delay Blob, but not actually kill it.

Well, NOW it would appear that the gene-therapy treatment that was mentioned to us in passing way back in May 2011 may be approved by the FDA for human trials within the next 3 or so weeks. What they will be doing is injecting live virus into the lesion. (In lab mice) The virus consumes any cancerous cells, but stops at the healthy ones. Thus actually curing the GBM in the brains of the mice.

This is the only treatment that has ever eradicated GBM in lab tests. This is awesome.

Honey needs to be totally chemo free to even begin to qualify for the study. That means no more chemo for at least the next 6 weeks. This is not awesome.

If he is not eligible for the study, DrC will determine a new routine of chemo drugs to see what comes next. This is neither good, nor bad. It simply is.

***Is anyone else thinking Pinky and The Brain (nog) or Flowers For Algernon here? (Seriously, don’t ask me, just google them if you don’t know….)***

Love you (and my previously oh so blissful ignorance)

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

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

Best. Sister-In-Law. Ever.

Honey’s sister GG, is visiting from the UK.

She arrived on Saturday the 28th.

I have been blessed.

Truly.

Because GG arrived on Saturday, I was able to go to the state capital to rally against the War of Women.

I absolutely would not have felt able to day-trip were she not going to be here.

Then, when I arrived home after almost 12 hours away, I found that the fairies had visited.

The dining table was free of clutter, I could see the counter-top on the island (peninsula).

I had to check to make sure I was actually in the right house….

Today the sister-fairie took Honey to his MRI appointment downtown, freeing me up to do nothing all day.

She will be coming with us to see Honey’s Neuro-oncologist tomorrow morning.

(I am so seriously hoping that we have an uneventful appointment – for her sake if nothing else)

Following our appointment at MDA, GG and I are planning a day o’fun.

When she visited last (in December 2011) she wanted to take me to get a girlie-mani-pedi, but I was rather down in the dumps and didn’t quite get the energy up to do much of anything.

Totally my loss.

I shan’t make the same mistake again.

This time, I will force myself to do something relaxing.

Sadly, GG is going “home” to the UK on Thursday afternoon.

The house always feels so empty after she leaves.

She brings a lightness to Honey’s countenance.

He loves his “big” (older) sister.

So do I.

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.