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April 7, 2012

I have been berating myself for not keeping this updated. But every time I think, “Hey, I’m gonna’ let everyone know what is happening…” there is something else about to happen right on the horizon and I end that thought with, “… as soon as [fill in the blank] is done.”As such, this post is long.

Buck

In case you missed the follow-up article (http://www.chron.com/life/article/Update-A-new-home-for-Buck-3427937.php), Buck is now living in Odessa. His adoptive father is named Brett. He is 29 years old, single(?), with no other pets, loves dogs, and loves being outdoors. Really, really, nice kid (I know, he’s not a kid, but he is to me!) The apartment is much quieter without Buck and I’m adjusting to how easy it is to walk around without him following me everywhere. Brett and I have been keeping in touch via text now and again and in his latest report he informed me that Buck not only enthusiastically fetches tennis balls but will go find them when Brett asks, “Where’s your ball?” in that how-to-talk-to-a-dog-voice. Sounds like a happy pup.

Funny side story to the whole Buck saga. Rice University’s (my employer) “Dateline” picked up the original story (guessing they have all our names in Google Alerts?!) and re-posted it (http://news.rice.edu/2012/03/12/dateline-rice-for-march-12-2012/). Not to be scooped, a friend of mine that works in the Marketing and Communications department at the Jones School (the specific school in which I work) then “twittered” the original story. BusinessWeek’s “B-School Twitter Roundup” (do we really need that?!) then reported on her tweet (http://www.businessweek.com/articles/2012-03-20/b-school-twitter-roundup). You would think that would be the end of the story. No. “Dateline” then reported on BusinessWeek’s report of the tweet (http://news.rice.edu/2012/03/21/dateline-rice-for-march-21-2012/). The good news for all of us is that my 15 minutes is now officially used up!

Mental Health

I’m never quite sure when someone asks, “How are you?” whether they are wondering how I am feeling or how I am feeling. Well, it’s a bit odd maybe. I am actually feeling quite good.  Despite the fact that we all know we could die at any moment, we don’t live like we could die at any moment until we are told, “No. Seriously. This will likely kill you – and soon.” And while I have frequently been accused of speaking my mind or being too “unfiltered,” I have finally received a hall pass for being so!

About two weeks ago, in bed, waiting to fall asleep, it occurred to me that I could wake up blind. Or deaf. Or unable to walk. Or communicate. What then of everything left undone, unseen, unsaid?

Physical Health

When I last left you, I had hair. That started coming out in clumps shortly thereafter so, before my scalp started to suffer the effects of the radiation, I shaved it all off again. Not that I particularly minded. For any of you – male or female – that have ever shaved your head, you know what I mean. It is SO much cooler (granted, temperature-wise, not style-wise) this way. Of course, when not toodling around the apartment, I wear a scarf, but it is still cooler than the thick mop-o-hair I am genetically inclined toward.

Finished radiation and, as a parting gift, got to keep the uber-stylish, custom-molded mask they clamp down to the table and use to keep my head from moving while receiving treatment. Not sure what I will do with it yet aside from scare the hell out of some kids come Halloween. One of the biggest side effects of the radiation – the fatigue – started to lift just recently. As for my short-term memory loss, I think that going into radiation with an already sucky memory has helped me not recognize if it’s worse! In the end, I am still quite disappointed that glowing in the dark is not a side effect as I would love to tell you stories about that!

To check for any additional metastasis, had an abdominal CAT scan, a bone scan, blood work, and got my heart checked. Everything looked fine.

As for chemo, I am receiving three kinds in two ways. First, we have resumed the once-every-three-weeks and relatively side-effect free Herceptin infusions – I have now had two. Less benign however are two oral chemo drugs (Xeloda and Tykerb) that, after hearing what the side-effects could be, I drug my feet on and started almost two weeks later than I was supposed to and, sure as shit, upon starting, began to feel crummy within a few days. My nurse took me off for a few days, re-jiggered the dose and I was supposed to start them again yesterday but find myself dragging my feet again. Tonight. I swear.

The quality of life question is coming up much more often this time around. The biggest problem with the chemo drugs making me feel crappy is that, unlike the finite six rounds of chemo I received two years ago (with the light I could see at the end of the tunnel), I am supposed to take these pills indefinitely. You start to wonder, “How much time am I really buying by taking these pills that make me feel like shit?” and, “When will being here and feeling like shit stop being worth it?” Guessing that’s why my doctor’s office was so responsive to my complaint. I’m sure they have seen more than their fair share of patients that stop following the protocol earlier than may have been necessary.

So? What about the tumors!? Barring becoming symptomatic, I will have my next brain MRI in early June. If I remember correctly (and what I’ve been telling people regardless its veracity!) is that the radiation has a residual effect and, if they MRI too soon, we won’t see its full effect. As for symptoms, typos are down to a normal incidence for someone typing with the advantages of auto correct and my penmanship is just as illegible as ever. After the MRI they will determine whether I need and/or am a candidate for additional radiation via CyberKnife (not actual surgery but a technique in which they use multiple beams of radiation that point to and terminate at specific tumors).

Putting My Affairs in Order (as if anything in my life has ever been in order!)

We (me, family and friends) took on this health crisis by having a good cry and then creating the to-do list from hell.

  • Find the perfect home for Buck
  • Will (down to what happens to the Pooh Bear I was given on my first birthday), advanced directive, medical power of attorney etc.
  • Attempt to get credit card companies to stop charging interest and/or renegotiate debt
  • Move out of apartment and into (house? shipping container? double-wide? RV?  bunker?) on my  uncleared and poison-ivy-choked ½ acre of utility-less land
  • Host fundraiser(s?)* to run utilities and clear land and buy and move (house? shipping container? double-wide? RV?  bunker?) to move to said land
  • Alternatively, get all the work and materials donated
  • Set up a website to promote the fundraiser(s?) and keep everyone up-to-date
  • Set up a PayPal account to receive donations
  • At the behest of those around me, make a ‘bucket list’ of activities that I, despite the sympathy-provoking nature of my condition, don’t think I will be able to make the time for or afford

*As you can imagine, creditors aren’t exactly chomping at the bit to lend money to someone with Stage IV cancer!

We (me, family and friends) also have a perpetual/ongoing to-do list (as you will see, we’ve done better with this list!)

  • Maintain ‘business as usual’ by going about the tasks of daily living including grocery shopping, laundry, baseball practice and games, attending theatre productions, and so on, and so forth
  • (for family and friends) Continue to work/go to school (for me) as much as possible because, when I don’t, I only receive 80% of my normal pay – and can only receive that much for a limited time
  • Research treatment alternatives and experimental studies in case what we are doing doesn’t work

And then, there is my personal to-do list

  • Continue to receive treatment
  • Spend as much time as humanly possible with the people that I love
  • Make time to spend as much time as humanly possible with people that I love but would not ordinarily make as much time as humanly possible to spend with**

**To my credit, I debated on whether I should highlight this as ‘done’ or not as I haven’t declined to spend time with anyone unless I was feeling particularly awful, I just haven’t sought it out or organized it myself. Even so, I decided to leave it unhighlighted.

All of this talk brings me to one of MY main points of this post – YOU!  So many of you have reached out to offer whatever help I need and, if you know me, you know I am far more likely to be the stranger offering kindness than the other way around. Besides, I’m also quite awful at even knowing what I need most of the time. I’ve been terrified for two weeks now to log onto Facebook (if you’ve ever been off it for a while, maybe you  know what I mean) and, after finally peeking today I see that many of you are moving forward with your plans to help with or without my input. After considering what I have on my plate already, please know that I deeply appreciate you taking the reins in this manner and applaud your spirit! Just let me know what you need from me.

Along this vein, I also need to acknowledge the generosity of the Jones School faculty I am assigned to who, recognizing the financial impact of the resumption of medical co-pays coupled with a diminished paycheck, have been making monthly contributions to help make ends meet. This support, not to mention their moral support and encouragement as well as that of my co-workers and supervisors, has been instrumental in my slow acceptance that I have to put myself first – at least in this situation.

Finally, If you are still looking for a way to help (you will know if you are if, when you think of me, you feel helpless) and aren’t sure what you can do, I am hereby knighting my sister (she doesn’t know this yet but it may come as a relief as she disclosed to me just this evening that she was off to figure out who she is!) to be my personal Networking Queen (she will require a much catchier title – I’m taking suggestions) and encourage you to contact her at tvandeusen@gmail.com. Tell her your ideas, talents, resources – whatever – and let her hook you up with others.

A Fondue (or, a fond adieu)

I must sign off now as my mother is set to arrive for a sleep-over in a few minutes and I have to hide my Teflon pan, white sugar, and other contraband she would disapprove of! Just kidding – sort of!

I PROMISE to not let so much time pass between postings again.

 

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