New Mexico, here I come…

Today I’m flying out from a rainy Atlanta to a, until recently, snowy Albuquerque for work.  In my role as a epidemiologist in the Division of Violence Prevention, I do work on (primarily youth-related) sexual violence (SV) and intimate partner (dating) violence (IPV).  As it turns out, SV and IPV in national surveys are most highly reported (compared to other race/ethnicities) in American Indian / Alaskan Native (AI/AN) communities.  Today and tomorrow, there is a meeting of the directors of the 12 Tribal Epi Centers that collect health related data for the various AI/AN tribes throughout the country.  I am going as a representative of the CDC to let the directors know that we (CDC) are interested in getting their input on how we can / should go about collecting this sensitive data from AI/AN respondents.  It should be a good meeting.

Of course, there is currently inclement weather here in Atlanta and there are rumblings of delays (despite what Delta.com says), so there is no telling when I might get to NM. Luckily, my presentation at the meeting is not until tomorrow, though I had planned to go to the afternoon presentations this afternoon.  We’ll see…

Not that I am glutton for punishment, but Friday, upon my return to Atlanta from Albuquerque, I turn around and head back up to Newark, NJ for yet another festive visit with my family.  This time around, we’re celebrating Hamburger Hanukkah.  It’ll be nice to not only see my siblings and mother (as I did in Thanksgiving), but also to see my father and my cousins, Aunts, and Uncles from my father’s side.

Unfortunately, I am the only one from my family going this year; it’s just prohibitively expensive to fly the whole Merle Hamburger clan up for the party.  I have found memories of Hamburger Hanukkah from my childhood.  The event used to be held in my grandmother’s (father’s mother) house, which was an old two story building with lots of places to play hide and seek with my cousins (especially, my younger cousin, Susan).

I remember that on the Friday of that weekend, my family would go to Granny’s house and we’d have dinner and wait for my Uncle and the cousins to show up (from NJ).  For me, the baby of my family, there was always an air of excitement in waiting for them to get there.  They’d finally arrive and I would get lost in the resulting flurry of hugs and kisses and greeting exchanges.  Reluctantly, we’d have to go home, so that all could sleep, but I was able to look forward to going back over and spending all day Saturday (including the gift exchange in the evening — I fondly remember Granny’s covered porch being STUFFED with gifts) and Sunday morning with the gang.  It was a true family get together that, in retrospect, I now treasure.

But things change and we, unfortunately, have to grow up.  Hamburger Hanukkah these days is much less involved, though still as festive.  My cousins all have their own families, as do me and (most of) my siblings and instead of getting together for a weekend, we get together for a dinner and a gift exchange.  While I wax nostalgic about these changes, I understand they were inevitable.  I hope that my cousins are doing a better job of getting themselves together so their children will know their cousins.  I know that I wish my siblings and I were better able to get together so my children could better know their cousins.  That’s the problem with living in Atlanta, when everyone else lives in the Northeast.

This weekend will be nice.  I will have an opportunity to see a lot of my extended family that I have not been able to see in a while, but I doubt it will be okay for me to crawl under a table (as I did when I was a child) and wait while my father handed out presents.

This year has been one in which I have been forced to, in many ways grow up and face some hard (and unpleasant) facts.  In an earlier post I said that ‘Chemo Sucks’ (and I still hold that sentiment quite strongly), but events in the last couple of weeks has pointed out to me the corollary to that sentiment: “Acting like an adult often sucks.”  Sometimes, I wish I could go back to a time when other people made the big decisions.  Unforutnately, I know that wishing a thing doesn’t make it happen (otherwise, I would have won the $150 million Mega Millions lottery this week).

Have a great Wednesday.

Merle

Feeling Better…

Wow, what a difference a week makes.  I know I sometimes hold my feelings close to the body, but last week I felt miserable.  As one friend suggested, perhaps I just need to accept that I have had enough of the chemo (remember, it’s effects are cumulative) that I’m going to not feel well for a couple of days after subsequent chemo treatments.  I’m not sure I am ready to accept that, but the lack of acceptance is likely due to my being stubborn rather than reality.

Chemo notwithstanding, though, I’m not sure why I was not feeling well last Tuesday.  As I mentioned, last week, I felt like I had the flu:  I was not nauseous, but I was achy and had trouble getting comfortable.  My temperature kept fluctuating between being hot and being cold (and my body could not decide which it wanted to be).  It was miserable lying in bed and being moved to tears because I just didn’t feel right. Luckily, by Friday evening, I was feeling 100 times better.

Saturday started out rough.  You see, I and some fellow Scout leaders, were going to an event called University of Scouting, and we wanted to get there by about 7:30a.  Unfortunately, I (apparently) was so stressed about the possibility of sleeping through my alarm that I was wide awake at 3:30a and could not get back to sleep.  (I ended up watching some movie on TBS.)  I was similarly worried that I would sleep through my brother waking me up for the Thanksgiving Day parade.

I mention this because i had thought (hoped) that I was, perhaps, ready to stop taking Welbutrin (the medicine I take to help with both anxiety and depression).  It would seem that I am not quite ready to do so, given that I got so worked up about a parade and scouting event.  I cannot understand what I have to be stressed about…HA!

This weekend was, as my friend Debra pointed out, typically busy for me.  Saturday was taken up with the scouting event.  Sunday our church had its annual Deck the Halls service, in which my family and briefly describe the traditions of Hanukkah.  After church, the boys and I went to an orienteering troop event at Stone Mountain (traipsing through the woods — mostly off paths — looking for 1″ PVC pipes stuck in the ground using only bearings, distances, and a compass).  I was really proud of my boys (they did a great job), but after 2+ hours of hiking through the woods (did I mention we weren’t using any paths?), I was tuckered. After orienteering, I came home and rested for an hour before having to turn around and head back to church to teach the human sexuality class.  So much for taking it easy over the weekend.

I’m looking forward to NOT having chemo this week.  There continues to be a lingering concern of mine about how getting chemo every other week (rather than 3 times / month as is typically done) affects the efficacy of the treatment.  In the end, though, the reality is that my body cannot take chemo more than every other week, so there’s no use trying to do it more frequently.  As I have maintained throughout this journey,  I will either remain cancer-free (they say I’m cancer-free right now, because the tests — CT scans and the CA19-9 — have not indicated any evidence of cancer in my body) or it will recur.  The Gemzar will either work or it won’t.  Meanwhile, I continue to enjoy the “benefits” of pancreas cancer — I don’t seem to gain weight even when I eat poorly (what can I say, there were lots of cookies and holiday goodies after the Deck the Halls service at church).

Well, there you have it; another stream of consciousness blog entry.  Talk to you tomorrow…

Merle

Chemo sucks…

You know, my cancer right now is fairly benign.  As far as I know, I am still cancer free (meaning there is no detectable cancer at the moment).  So while people say “Cancer Sucks”  I would say that cancer treatment sucks.  Unlike my pre-surgical hardiness to the chemo regimen, post-surgically, I have been something of a chemo wimp.

Chemo this week, simply put, kicked my ass.  I tried to go to work yesterday, but by midday, I was wiped.  I came home and rested in my healing chair, which did little, best as I can tell.  I tried to sleep and was successful until about 3a, afternwhich, sleeping was merely a dream.

On the insurance front, I found out today that BC/BS upheld their denial of my pre-surgical radiation therapy as not medically necessary.  In truth, what they declined were the charges associated with planning the treatment and the physician’s fee associated with the treatment.  In total, the bill is over $50,000.  I guess I should feel glad that Emory has reduced the costs to me only to $5700, which of course, is still a lot of money for my family.  Not sure what I am going to do, ‘cept I do have a cousin who is a lawyer that specializes in insurance related issues such as these.  Maybe she can help.

All in all, things are kinda crappy at the moment.  We did, however, set up the Christmas tree yesterday to my children’s (well, my daughter’s) delight.  Both my sons are old enough to know that Santa is more a concept than a person, but my daughter is full on with the whole Santa schtick and is already counting down the days.

I hope you all have a great weekend.  Hopefully, I’ll be able to get out of the house and be active somewhat.  I hate feeling this way.

Merle

From the chair…

Hey all.  Sorry I haven’t written in a couple of days.  I was just dead tired from the flight back from NJ on Monday and yesterday I had to leave work early because I wasn’t feeling too well.  I ended up getting into bed and trying to get warm.  I didn’t have a fever, but I kept going from being hot and then cold and not being able to get comfortable.  I’m still feeling a little yucky, but I didn’t want to miss my bi-weekly chemo.

Not much to report today, though.  I am feeling kinda down today (probably because I am still feeling under the weather).  It’s days like today that the outlook is a little less positive and that makes me sad.  One thing I am not looking forward to is having to once again pay for medical services.  You see, our family met our maximum out of pocket amount (catastrophic max) in May of this year; since then, we have not had to pay for the procedures and / or medication.  THANK GOODNESS for my health insurance.  Unfortunately, beginning January 1, we will begin paying for services and medication.  Equally unfortunate, however,  is the fact that we will likely reach the catastrophic max in 2009 (likely before May); such is the life of someone with cancer, I guess.

Merle