Preparing for Hospital stays, Geek Style, Part 1

It’s been a crazy few months for us, and even Geeky Moms have their limits in what they can handle without needing to escape to game, chat with Trusty Friends and fellow church members via Skype/Facebook, podcast about E3, rock out to Skillet’s new album ‘Awake’, or role-play, which is what I’ve done. I’ve played Dragon Age, Star Trek Online, Pokemon (don’t laugh until you’ve tried it. It’s gaming crack, that’s all I can say), and D&D online via Skype. I also role-played in some of the RP stories on Lotus Fleet, did simulcasts with Trusty Friends Lynk and leXX during E3 presentations, and chatted. I’ve learned more about Andorian birthing than I ever thought was possible given that it’s an imaginary alien species from a 44 year old TV show. Still, I had a good time role-playing how my ship’s doctor helped save a pregnant zhen, and the pleasant diversions are very welcome. This may sound totally corny and tremendously Geeky, but some of my online friends are as close, if not closer, than some of my local friends. You all have helped me in many ways with prayers, good wishes, and warm thoughts, and I treasure you all.

My sister’s cancer diagnosis has been rough on the entire family, complete with all the attendant emotional ups and downs that come with such a devastating diagnosis. The good news is that the chemotherapy has been tremendously effective, and her prognosis has improved from ‘about 5 years’ to ‘you’ll get to see your children grow up’.

We’re still dealing with the roller coaster of feelings, and the family dynamic challenges. Trust me, when you get a cancer diagnosis in the family, the dynamics NEVER improve. The best you can do is keep them from going down the crapper completely and creating the family equivalent of Mt. Vesuvius, and/or something that belongs on the latest hot TV reality show.

In more cancer news, we learned a few weeks back that my sister-in-law, Glenda, had been diagnosed with breast cancer. They caught hers very early, and she did fantastic in her surgery last week. She had no lymph node involvement on initial pathology results, and we’re waiting to hear for the final results, but all indications are that she’ll have a complete cure. She says she’s very glad to be rid of the cancer.

We have also had the challenge of dealing with my daughter’s ADHD diagnosis and different medication changes associated with that. This is one of the Parental Challenges of the Century. At one point, we were trying a dose of medicine that was way too low and just made the symptoms worse, and by worse I mean, “if the pediatrician doesn’t fix it Right Now, the house will explode.” I told the pediatrician “I don’t know who you’re going to have to peel off the ceiling first–her or me.” I briefly thought banshee training would be of great benefit to her as a career choice. I spoke with the Banshee College of Shrieks, and after they listened to her one time, they determined she’d test out of their PhD program and asked if in fact they could invite her for a guest lectureship. The medium dose of the medication seem to be working better, however, so I think we’ll hold off on any career scream plans for the time being. Just to add to the fun, we also learned yesterday that she’s still allergic to dairy after all, and also allergic to soy. Ever try to find margarine or shortening with no dairy or soy in a conventional store? Good luck with that. Soy and dairy are 2 of the 8 top food allergies. You think some major margarine manufacturer execs somewhere would say to themselves, “Hmm, maybe we should make something without dairy and soy and sell it in major groceries. We could make a ton of money from the people who have these allergy issues.” Nope. It hasn’t happened, though I have been assured by Earth Balance that I can find their soy and dairy-free spread at Trader Joe’s or Whole Foods Market if I am willing to drive 35 miles.

Some good news–we found an absolutely delightful dog at Safe Harbor Humane Society, who we have named Sparky. We missed Lucas, we all needed a new dog in our lives, and the shelter had several available. His previous owner had to relinquish him because he lost his job and had to move to an apartment that wouldn’t allow dogs. I don’t know who the previous owner is, and I’m sure he was heartbroken at giving up such a wonderful dog after having him as part of the family for 5 years. I’m proud of him for doing the right thing and not just throwing the dog out on the street for animal control to find. I just wish I could let him know how happy his dog is with us and how we’re working hard to take good care of him and love him.

Sparky

Sparky is mostly a black Labrador retriever, possibly with a bit of pit bull or boxer in him, since he’s got a massive head, very strong jaw, and quite stocky body. He’s collapsed 3 tennis balls since we got him, so we finally got smart and bought Kong toys, which are much tougher. He takes tremendous joy in playing ‘fetch’, and we now take tremendous joy in playing ‘throw’. He has a very sweet temperament and adores tummy rubs. He did well in his introduction to our cat, Joey. The two now sniff each other often. I suspect they’ll be doing some playing in a few more weeks as they learn each others’ boundaries.

In addition to all that, I’ve been dealing with my long-term knee problem, and I’m actually having a total knee replacement for it next week, which brings me to the actual point of this post–how Geeks prepare for a hospital stay. As a Geeky Mom, this involves multiple things, not the least of which is blogging about it.

First, you’ll be happy to know that not only does my surgeon do nothing but knee and hip replacements, he also has a website, and he’s actually tweeted a surgery. I suspect that actually someone typed for him while he did the surgery. I’ll ask him next week for sure. Inquiring minds want to know.

I have a list of things needing to get done around the house prior to surgery because I’ll be maneuvering on a walker and/or crutches for several weeks after I get home from the 3 day incarceration in the hospital. I’m hoping for crutches, because walkers really make me feel old beyond my permanent 29-ness. In fact, I informed the ortho that I would use it if he forced me, but I would feel the urge to decorate it with visually obnoxious items, such as pinwheels, a loud shiny horn, and neon reflective Jar-Jar Binks stickers.

Anyway, the list of tasks includes:

1. Asking my hubby for the 9th time to please put the back seat back in the van. I have been asking this since, oh, last March. I’m tired of chasing cans of kidney beans around the back of the van when they roll out of the bags. Here’s a hint for those of you guys who hate being nagged: if you do something you say you’ll do the first time, we’ll never have to ask you again to do it. Just a pro-tip for husbands, there.

2. Not killing my daughter when she does her best banshee impression about having to clean up the mess in her room.

3. Playing STO and doing RP in the supreme effort to put off serious house-cleaning to the very last minute.

4. Creating playlists in iTunes in the supreme effort to put off serious house-cleaning to the very last minute.

5. Teaching Trusty Friend jovani how to use Audacity in the supreme effort to put off serious house-cleaning to the very last minute.

6. Making a long list of things I need to bring to the hospital in the supreme effort to put off serious house-cleaning to the very last minute.

7. Obtaining a raised toilet seat per doctor’s orders. This adds to my feeling of youth about as much as a walker does.

8. Getting the dog neutered and my daughter tested for allergies the week before surgery, because I don’t have enough stress in life, and I’m making the supreme effort to put off serious house-cleaning to the very last minute.

9. Mourning over the fact that Trusty Friend N’Eligahn is not going to be hosting a D&D session this Saturday, thus preventing me from making the supreme effort to put off serious house-cleaning to the very last minute. Never fear, however, I’ll find something to do instead, perhaps play more STO, write another RP post, blog, or jam with the family on Lego Rock Band. I’m very creative in avoiding house-cleaning.

10. Preparing menus and doing a mass cooking marathon in the supreme effort to put off serious house-cleaning to the very last minute.

One of the things I did today was check out the hospital website to get information on my stay there. I found out important things like “as a patient you’ll be given a gown to wear” (more like a half a toga), “no cell phones” (yeah, right), and “we have 24 hour security” (so the psych patients stay in psych). Since I’m going to be an inmate for 3 days, and living without internet is not my idea of A Good Time, I decided that one of the first things I, as a dedicated Geeky Mom, should do is check out internet availability. To my great delight, I found out the hospital has this cool thing called Skylight Access Interactive Patient system. It comes complete with a “wide array of services” such as cable tv, INTERNET, health videos (that’ll put me to sleep for sure), ‘healing music’ (read, New Age interpretations of bad elevator music versions of Simon & Garfunkel songs), INTERNET, the ability to order my meals from the kitchen and extra toilet paper from housekeeping, and, INTERNET. The internet includes a wireless keyboard. My guess on why the keyboard is wireless is Skylight’s lawyers feared that those of us under the influence of Good Drugs might do something with the cord that would involve lawsuits against them. This is in spite of the fact that someone like me will be a. attached to a machine that will move my knee around pretty much all the time, and b. we’re all attached to IVs and assorted other medical things with odd, unintelligible Greco-Roman names.

Now, you may ask why on earth I’d want to be on the internet hours after having chunks carved out of my thigh and leg bones and pieces of titanium hammered into them for my new ‘bionic robo-knee’, as Trusty Friend Dath Max calls it. I mean, we’re talking power-tool heaven for Mr. Fix-It types here. The answer: Because that’s what Geeky Moms do. I may only be online for about 2 minutes the first night, provided I’m not drugged into oblivion by pain killers, and for limited times the next day or two after that, but by God, I actually have the opportunity, and that’s the important thing.

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My sister and thymoma

This is an x-ray image of a chest. Both sides ...Image via Wikipedia

No one ever wants to hear bad news, especially when the bad news involves cancer. Twelve days ago, we received simply dreadful news.

My dad called me that Saturday morning, and said “Are you sitting down?” If you’ve ever heard those four words, you can be almost guaranteed to receive Very Bad News, or find out that you’re pregnant. My dad, being of the male persuasion, was not going to be pregnant unless God decided to do something Truly Bizarre, so that was out. He had just had a cat scan the previous day on his carotid arteries to see if there was any blockage. So, naturally, I assumed he was calling to tell me he was going to have surgery. Since I’m a doctor, this does not constitute Very Bad News in my book, although I will readily admit that unblocked neck arteries are far better than blocked ones, and carotid surgery isn’t on my Top 10 List Of Fun Things To Do. However, it’s not a life-threatening kind of thing. I continued pouring the morning coffee into my mug.

He said, “Your sister, Kate, has cancer.” Those five words were indeed Very Bad News. I sat down. I set my coffee cup on the table because I wasn’t sure how bad the shaking in my hands was going to get, and coffee burns on top of Very Bad News would have made my day even worse.

My sister is 3 years younger than me. Unlike me, she will readily admit she’s 40. I still am in denial and state that I’m 29. Permanently. So it’s not like we were expecting something like this in the prime of life.

Kate is an amazing woman, beloved wife of a pastor (‘pastor’s wife’ being an unpaid full time job in and of itself, but that’s a story for another time), fantastic mother of 3 terrific kids, and owned by this completely cute giant fuzzball of a sheltie. I say ‘owned by’, because Kate is so nice, she doesn’t know how to say ‘no’ to giving the dog treats like, say, whole hamburger patties and the remains of last night’s casserole. She says he makes these really sad puppy dog eyes at her, and it makes her heart break. The dog is now on special prescription low-calorie dog food because he’s as wide as he is long, but I suspect a hamburger sneaks its way into the special diet food just the same.

It’s been a long 12 days, not unlike riding a giant roller coaster, except not fun. The initial diagnosis was lung cancer or mesothelioma. There are several tumors in her chest cavity, including one wrapped around the major blood vessels as they enter and leave her heart. I despaired, because the prognosis for that, with as big as the tumors in her chest are, was Very Bad. ‘Horrendously Bad’ would have been the understatement of the century.

Then we got news that it might be lymphoma. More tests were done, including a needle biopsy and then a surgical biopsy. By this time, my poor sister had turned into a giant pin cushion. Good thing she had an air mattress in the hospital. The surgeon even told us a week ago after doing the surgical biopsy that he was pretty sure it was lymphoma, but, like everything else, we had to wait for the final pathology results. I told my pastor that you’re in a really weird place in life when you pray FOR lymphoma, the alternatives being that much worse. We did a little happy dance at the surgeon’s news, because lymphoma has something like a 70% cure rate, not just ‘treat it until you can’t see it on tests, and then treat it again in a year or two when it comes back’.

A couple days after that, we got bad news again on this down-up-down evil-coaster ride. The oncologist and pathologist thought some of the cells on the pathology slides looked like a kind of rare cancer called thymoma, rather than lymphoma as we were hoping. They decided to transfer her to Northwestern University Hospital on Monday so that she could get more advanced care because it’s such an unusual cancer. After yet more tests, and some initial treatment with prednisone to shrink the tumors, they finally confirmed today that it is indeed thymoma (a type of cancer that starts in the thymus gland), and actually started chemotherapy tonight. The ideal treatment is to do surgery to remove all the tumors, but the ones she has are so big right now it would be too risky to do it. Of course, being a doctor, I immediately went to the National Cancer Institute’s website to learn more about it. I also found the Foundation for Thymic Cancer Research, which I forwarded on, that being about the only thing that is within my power to do aside from praying, which I’ve been doing since we got the Very Bad News. Waving a magic wand is outside my sphere of knowledge. I work with eyeballs, and God has the corner on miracles. My sister is a woman of amazingly strong faith, but she’s going through a rough time emotionally as well as physically. If you’re the praying type, please put her on your prayer list. There’s a verse in the Bible, James 1:2-4, that says “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” I told God, “I understand the testing, but perhaps a little less joy and perfection would maybe be OK?” God replied, “Yeah, right, I don’t think so.” I’m not sure, but He might even have rolled His eyes at that one. Nuts.

In the Ultimate Irony Category, I got a phone call tonight. It was from the American Cancer Society. They were calling for a donation.

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