If You Just Took Out the 'Visiting the Oncologist' Part of the Trip.....

So....aside from the fact that we're traveling to Houston to consult with an oncologist who routinely deals with more advanced issues of melanoma, there are bits and pieces that could be interpreted as enjoyable    It really has been a joy to watch details fall into place as friends and family meet our needs for this MD Anderson trip.  Latest awesome thing: a friend (whose name rhymes with 'Schmissy') called and asked if her husband's Marriott hotel reward points might be helpful -- seems she'd found a Marriott that was listed as being quite near MD Anderson.  Actually,  as I'd looked online a few days before, I'd scrolled right on past this hotel, since its convenience to the hospital was reflected in its nightly rate.  We now have reservations at said hotel, thanks to Schmissy and Co. :)

We also had a family member call and insist on taking care of the kids' school supplies and enrollment fees for our activities.  :) They'd both been getting a little antsy, asking when 'the back-to-school' shopping trip was going to happen....and I'd been stalling a bit, trying to see what effect Houston was to have on the ol' budget.   God is good. :)

Last thing I'll mention....and you'll have to put this in the context of the past few months: (as a patient or patient's loved one) having to be your own advocate every inch of the way, assuming that you'll have to remind this person to tell that office about these results and not those.... you know the drill.  It was with delight that I read the following email from an MD Anderson clinical trial contact person named Sheila.  Since our first inquiry into a set of vaccine trials, she has responded promptly and kept Scott informed of which trials he might be eligible for.  Again, coming from our experience of the left hand sometimes not knowing what the right was doing, this email brought a smile to my face:

Hi Mr. and Mrs. Malone,

 

I see you have an appointment with Dr. Homsi on the xxth.  I will make sure I am there when you get to your appointment.  I will let Dr. Homsi know we have been talking about the trials.

 

Thanks,

Sheila

Who knows....maybe no one else reading that would feel all warm and fuzzy like I do...and that's okay. :)  But I read it, knowing that Sheila is part of a huge place of business where left hands could very easily not know what the righties are doing, and I love that my hubby/my main squeeze is being taken care of. :)

 

Tomorrow/Friday should be the day we find out for sure that we can fly on the Corporate Angel shuttle out of Bartlesville.  Thank you for your prayers!

Donations through Paypal

I've had several people ask if they can offer financial assistance, so I'm going to go ahead and make it a little easier. ;)  The trip to Houston has removed any qualms I had before....it's a walk by faith at this point.  I actually even joked with a friend about this topic of having a "Paypal donation" button on the blog about a month ago -- she was concerned about Scott's being off work and knew we were a homeschooling, one-income family.  Man, I need to stop joking about stuff like this. :) 

Although I am very hopeful that we'll get seats on the "Corporate Angel" flight, we're required to have a contingency plan in place, and we'll have to pay for lodging and meals.  My mind can't even conceive of what we'd do if he were enrolled in a clinical trial, which can require visits once/month to Houston for vaccinations.  And then there's the whole 'back to school' list of textbooks and supplies and yada yada yada that makes my tummy churn....but...deep breath..."One day at a time",  right??

That will conclude today's telethon....going to go look in the medicine cabinet for a very large band-aid for my pride. ;)  Love to all.

Houston, We Have an Appointment!

Okay....I promise I was totally planning on dragging myself outta the mullygrubs and making a new post, but since we do have some noteworthy news, perhaps my blogging won't be quite as mullygrub-ish. :)

We got a call today from MD Anderson (cancer specialty hospital out of U. of Texas in Houston) and we have a consult appt next week!  I'd never, ever had any idea about how this kind of stuff worked -- never crossed my mind that insurance might cover things that were out of state...'cause why on earth would anyone ever go out of state unless you needed an ER while on vacation, or something??  So it was with total cluelessness that I searched our insurance's allowable providers online after looking at MD Anderson's website (check it out...it's fabulously informative) and was elated to figure out that it was a possibility.  We got the ball rolling, and thanks to efficiency, grace, and compassion on their end and Scott's local drs' offices, we have a consult next week.  

The beauty of seeing an oncologist at MD Anderson, with no slight to any of our local providers, is that MD Anderson has an entire department of oncologists dealing specifically with melanoma...probably even docs who specialize in certain stages of the disease.  Docs also have instant access to clinical trial info going on there.  We missed out on a trial, simply by not being aware of it, that involved testing the original tumor tissue; however, that particular trial had to be done w/in a given period of time of his original tumor excision.  You can't get worked up about every missed trial....just citing a benefit of being at a cancer research "hub".

We've also already stumbled onto an organization called Corporate Angel Network that, given available seating, charitably flies cancer patients to MD Anderson on corporate jets!  There's a 'shuttle' that runs from Bartlesville to Houston, Monday thru Friday!   (I'm sure that the Bartlesville-to-Houston run would have to be oil biz....what a fabulous use of empty seats in a corp jet! Who knew?!)  Downside is that you can't find out for sure that you're 'confirmed' until 72 hrs prior to flight -- the execs get first dibs.  We'll also have to pay for our own lodging and meals, of course...but getting there for almost free is brings-tears-to-my-eyes wonderful!  God is good.

One more thing I have to shout about -- our Keystone friends who got together and made a ton of meals for our fam to put in our freezer!!  Oh my goodness....what a fabulous-ity (my word) it is to look on our printed out 'menu' on the fridge and choose a 9x13 meal from the freezer, following the conveniently labeled instructions on each one.   These sweet ladies probably wouldn't want to be blogged about (although the label-makin' ring leader's name rhymes with "Shmeanna") -- and they just couldn't possibly know what a blessing their work has been.

I'll keep you updated on Houston stuff....thank you for the encouragement and prayers.  I'm working on getting an 'add on' to Blogger that lets me respond to each comment specifically.  Thank you, thank you for your sweet words.  xo

Quick Update - Having to Go Different Route

The Interferon side effects were a nightmare.  Worst headache of your life, nausea that repeated doses of Zofran wouldn't even touch, 102 fever, shaking chills...you get the picture.  Maybe someone could muddle through (I honestly don't know how with symptoms like his) by knowing that there was a big payoff at the end, but not so with interferon for melanoma.  Here are a couple of articles that explain it better than I can:


http://theoncologist.alphamedpress.org/cgi/content/full/10/9/739

http://skincancer.about.com/od/treatmentoptions/a/ifn_debate.htm

Scott and I are both at peace about stopping the Interferon treatment.  His oncologist wants to now do radiation on the armpit where the melanoma showed up, and then we'll move forward with trying to find where trials of the vaccine are being done.   Several people have suggested a consult with MD Anderson in Houston, where they have an entire department devoted to melanoma...and I'm checking to see what our insurance will cover.  Feverishly trying to become educated on the nutritional aspect as well so we can make big changes in diet.

There are days when my own back is screaming at me so loudly that I can't stand to sit at the computer long enough to get an update typed out...and my plantar fasciitis has flared back up for some reason.  We'd make an interesting pair to watch if we ever made it out the front door. :)  This said so you know that updating our friends and loved ones is always on my mind but sometimes just can't get done.  Keep us in your prayers, please. :)

imPORTant Things!

Get it??  Scott got his PORT put in on Friday...and I titled this post "ImPORTant Things??"  :)  You don't get this kind of witty writing just anywhere.  

Okay...let me redirect my frustration from a horrible Friday into some helpful tips for someone else.  I'll title this post "5 Things You Want to Avoid When Having Your Next Out-Patient Surgery".  And in no particular order.....

• If at all possible, avoid having your procedure scheduled on a Friday afternoon.  Lots (maybe the majority?) of surgeons take off or don't schedule anything for Friday afternoons and the outpatient facility very possibly has less-than-their-normal amount of staffing.  This could result in longer wait times and (just possibly) the staff that is left behind to work might give off a vibe that says 'I'm irritated that the surgeons regularly add on patients without checking with nursing staff and I really wish that I had gotten off four hours ago when I was supposed to".  Understandable....jus sayin...four other perfectly good days. :)

• If at all humanly possible, even if it's a 'minor procedure', bring along a loved one or friend for the whoole shabang -- yes, even if it’s just local and not general anesthesia.  This may seems like a no-brainer...but we've experienced it both ways.  I’m ashamed to admit that I actually let my sweet, nervous hubby be by himself for his first round of surgery.  SOB!  Here’s what I learned:   there is no possible way that the patient can have the same eyes, ears, and extra set of needed hands that the accompanying person can have.  With absolutely no horn-tooting intended, I was able to pick up on things that Scott never would have (and didn’t,  for his 'alone' surgery) that were to his benefit -- help he either wouldn’t have thought to ask, didn’t wanna look like a needy baby by asking for help, or he was asleep and didn’t know he needed anything. :)  Nope, not trying to imply that sub-standard care happens when the patient is alone; but I know my husband well enough that I can tell by his expression, etc. if he’s hurting, mad, nervous, you know what I mean. (All the spouses in da house say ‘hollah’!)  These were things that the staff very likely wouldn’t have minded doing; they just can’t always read minds. :) Oh, and speaking from experience, the patient may not remember all the post-op instructions if he’s alone!

• Be aware that, because of a growing abuse of narcotic pain medicines, you may not be actually and technically offered the narcotic pain medicines unless you specifically ask for it.  Again, not the fault of a “lazy” nurse who doesn’t think you need anything stronger....but the fault of the system that narcotics abuse has left us with.  A patient may have no  idea that his surgeon/anesthesiologist considers it common practice to make him comfortable with something in the IV or by mouth, both before and after surgery.  Don't interpret the absence of an offer for add'l pain med as an assumption that no one thinks you need it or it's not common procedure.  Be honest with your pain level...they’ll ask you to ‘rate it’ on a scale of 1-10, and there you go.  Furthermore, try not to blindly assume that the nice lack of pain you feel at the hospital doesn’t have a tendency to start rearing its ugly head around midnight, when that local is worn off.  ...and that’s not pretty for any of us.  Take the piece of paper...you don’t ever have to fill it!

*Disclaimer: if patient has a history of any kind of addiction issues with narcotic meds, I’m not so much telling you that for this special day at the hospital, you have every right to just     get loaded to the gills.  Nor do I believe that a narcotic problem in the past means that you     can’t ever receive anything more than an aspirin for pain -- you just get to be much more         purposeful, accountable, and transparent with your doctor and staff.  

• Ever had a...shall we say..bit of a ‘personality change’ after anesthesia?  If your answer was ‘heck no!’....just double-check with your spouse before going on. ;)  There might very well be a drug that you could do just fine without, if your anesthesiologist agrees. Certain perameters are no doubt involved...like a shorter amnt of time that you’re ‘out’ is my undoctorly guess.  A drug named Versed (2 syllables)...or one very similar in its ‘family’ is very routinely given either right before surgery or in the OR; it’s used for drowsiness, help with anxiety, and so that the patient will not remember the details of surgery. Have you ever noticed that a loved one might remember more than you’d think on the day of surgery, but as days go by, he remembers less and less...til they pretty much don’t remember much about the day at all?  Many patients also live their lives fearing a surgical procudure, simply for the fact that they’ve been told they turn into swearing sailors or flirt with all the nurses.  (Irks the wives.)  Anesthesia Scott didn’t do these...he just had a bit of an ‘attitude’ and might want to argue with anything and everything.  Bless his heart, he looked at me forlornly when they wheeled him to surgery and said “I apologize now if I’m a jerk afterwards. :)  However, from the moment that I locked eyes with Scott in post-op, I knew that we weren’t going to have a visit from “Anesthesia Scott”.  :)  He awoke much less groggy than ever before, and without the edgy feeling. And after asking a few times if the nurse could peek at the meds Scott was given in OR, which one was missing??  Yep...Versed! But don’t take my word for it in your own cases...visit with your anesthesiologist.

• On a lighter note:  If it's not offered, ask if the facility as a patient-warming (or -cooling if you're my husband) system called "Bair Paws".  You may have seen a youtube video I posted after Scott's 2nd surgery.... but I was ticked to discover, moments before we were to leave for home, that it was available the whole time!  Scott told me that I  seemed to be much more smitten with the system than he was...maybe I just have a thing for gadgets, but for patients who tend to freeze at the hospital, it's worth asking for.

• This one applies to patients as well as spouses, who often have job of communicating with nursing staff:  Treat your nursing staff with an appropriate spirit of humility and appreciation.   This  should be a given principle of how you treat others, but if that's not the way you treat people by default, know that any rudeness, condescension, ugliness (yes, even when you don't feel good) is only shooting yourself in the foot.  No, I'm not insinuating that your nurse is going to spit in your IV if you're rude to her, but when your nurse or nursing assistant knows that you truly appreciate his or her work, skills, and just 'help'....you might be blessed by the natural outpouring of his/her appreciation for being appreciated.  Nurses have to put up with a lot....way too many patients and family who take any frustration out on the ‘messenger’ a nd this is a biggie 'v: I’ve had many a u known many nurses who felt they could do very little about treatment from the very doctors they have to work for.  Of course I know there are plenty of gut I've had many nurse friends who felt they had to put up with insults, profane and sexually-laden comments and even behavior.  Those of us not in that field (and surgery can be the worst, for some reason) would just assume that no one has to deal with this anymore, but it happens.  So if the golden rule fails to motivate you, understand that rudeness towards your nursing staff, simply because he or she is available for you to vent frustrations upon, is just foolish.  

Be well and may you stay out of the hospital for a good, long time! :)

Next Step in Our Journey

Although a surprise that we were getting Scott worked in for his "central line port insertion" on Friday afternoon (today!) hubby was relieved to be making even a small step in his long journey of interferon treatment for melanoma.  The surgical insertion of this catheter will eliminate the need to search for a new vein each time during his month of IV treatment.  It'll be removed after that month, not needed for the months of injections of the interferon at home.

Surprise phonecall #2 informed us that the actual treatment starts this Monday morning.  After hanging up, i took a little moment to panic/cry/stomp on the floor, subconsciously assuming that this has all been an elaborate Ashton Kutcher prank. (Hey, it could happen.). But alas, no Kutcher or Demi to be seen. 

So prayers appreciated for smooth portin' on Friday afternoon....but especially for what weighs heavily on my mind... this first month of 5 day/wk treatment. Will keep posted!

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My Friend in the Little Red Farmhouse!

My son Jake is spending the night at the cutest little red farmhouse tonight.  My friend Kim and her husband and three boys have worked hard and were finally able to move in to their dream  farmhouse this past year.  When I dropped Jake off this afternoon, visited with Kim, and checked out her blackberry bushes, it dawned on me that I have plenty of friends and family who would be interested in their work.....and she does already have an awesome blog with lots of pics!  Check it out at http://www.redfarmhouse.blogspot.com/.

The saga of building their dream farmhouse, dreamy not because of square footage but because of design and decor, is quite a tale.  It caught the interest of The Daily Oklahoman, where the family's work was described as a "not-so-big masterpiece".  And the chicken coop ain't so bad, either.

If I didn't love Kim so much, I might be childishly envious of her everyday Martha Stewart-esque abilities and her inside-and-out beauty.  Oh, I know she's not perfect -- she's cruel to her children and she drinks like a fi....oh, okay...I'm lying.  She's perfect.  ;)  But check out her blog and see for yourself. :)