Lupus Walk Committee

French Word of the Day: violet (vee-oh-lay)- purple

My chemo session is officially February 13th, but I have been reassured that this will in no way affect my Lady Gaga concert experience that night.  This is really more relevant for the people who are going to be sitting directly in front of me, because you know I’d still be going to that concert even if I was getting sick.  So people in front of me, you’re safe.

I’m still doing my part to search for a cure.  Yesterday, Rocio and I had our first Lupus Walk Committee meeting.  (I found out I wasn’t the only one who was really excited about the tumbler.  We were all about raising money for our cause, but the tumbler is purple.)

Rocio and I (shown here on the left) pretend not to notice there's a camera being focused on us.
Rocio and I (shown here on the left) pretend not to notice there’s a camera being focused on us.

The official date for the Chicago Lupus Walk has yet to be determined.  It’s probably going to be September 22nd, but the city has to approve our date.  As it’s the city of Chicago and this is a walk for a non profit that doesn’t have any money to bribe them, I’m assuming the wait’s going to be awhile.

This year we’re adding a run.  To shake things up, it’ll be some kind of fun run.  (I don’t run unless I’m late.  I will be briskly strolling.)  Rocio and I are gunning for the “purple people eater” theme where everyone just wears insane amounts of purple.  I’d like to throw purple glitter at people too, but I’ve been told they might not appreciate that while they’re running. (Question for the future: where would one buy a purple tutu that is not child-sized?)

If anyone wants to join us, I’ve already started our team page.  Rocio hasn’t joined yet, so I’m already being a better committee member than she is.  Not that it’s a competition, because it’s not.  But if it was, I’d be winning.

I won’t make you wear purple, but I can’t promise not to look disappointed if you don’t.  I’m giving you 8 months notice.  This is far more than the 5 days I gave you last year.  If you’re not in the Chicagoland area or if you’re unwilling to commit to an undetermined September date but still want to donate, here’s a link to my personal page.

If you’re have a business that might be interested in getting a tax break and wants to sponsor, feel free to email me at frenchwithanamericanaccent@gmail.com.  I don’t know what businesses read this, but I did promise to shamelessly beg for money.  Such is the life of a committee member.

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Scheduling Appointments

French Word of the Day: incommode (awn-co-mode)- inconvenient

Because (clearly) I’m trying to use all my vacation days for 2013 before the end of January, I had another doctor’s appointment today.

My chemo sessions are going to be a bit longer than I thought.  They’re a 6 hour affair.  Why do they need 6 hours?  That’s a good question.  I’m guessing they’re taking me to a musical as part of the treatment.  Everyone gets some chemo at intermission.  (Sidenote: do you think my fellow chemo-ers would be receptive to a sing-along?  I think I should bring my guitar.)

The sessions will start either February 6th (two days after my birthday- happy birthday to me) or February 13th.  As soon as I heard this, I mentioned that I have a Lady Gaga concert on the 13th that I cannot possibly miss because, you know, I have my priorities straight.

I’m convinced that being a health specialist is the best job in the world; they never work.  Trying to schedule an appointment generally goes like this:

Patient: Okay, I work Monday through Friday from 8 am- 5 pm, like everyone else in America.  Do you have any times available when I’m not at work?  Preferably 7 am or a Saturday.

Scheduler: Well, Dr. X only has hours from 2-3 pm on every 3rd Wednesday of every other month.

Patient: Seriously?  That’s an hour, not hours.  How does this clinic even make money?  Do you only see 5 patients in total?  I just don’t feel like this is a good business model.

Scheduler: So does next month at 2:45 work for you?

Patient: Not really.  I have a huge presentation at work.  When’s the next appointment?

Scheduler: 2015.

Patient: Next month at 2:45 is fine.  I can find a different job.

Lupus patients see several doctors at once because our whole body is being attacked.  You basically have one doctor per organ, plus your main lupus doctor.  I have so many doctors that I constantly forget all their names.  This only becomes a problem when one of them has to send a letter to another.  (“I’ll let your dermatologist know.  What’s her name?” “Um… I should know this…. It starts with a ‘W’?  Does that sound right?  To be fair, she doesn’t know my name either; she has to look at my chart to figure it out.”)

Trying to organize all these doctors has become a military effort, but I’m up to the task.

Half of the dots represent doctor's appointments, the other half involve food.
Half of the dots represent doctor’s appointments, the other half involve food.

Drop ‘Em

French Word of the Day: la fesse (la fess)- buttocks

I’m sure you’re all looking at the word of the day and thinking, “Meghan, what?!”  You now understand how I felt when the nurse came into my exam room with a long needle and said, “Drop your pants.”

I responded the only way I knew how.  “I don’t think we’ve known each other long enough to take our relationship to that level.”

My face when the nurse came in.
My face when the nurse came in.

That’s right; today was menopause shot day.  It actually wasn’t that bad, so I think I’m finally becoming immune to needles.

The doctor who came in was really excited about my lupus.  He kept asking me questions about my past and sharing studies about lupus that the hospital had published.  At one point, he called it all “fascinating,” which is just how you want to hear your medical history described by a medical professional.

I won’t start to see the effects until a few weeks from now, but I will be able to drink properly on my birthday.  Three cheers for alcohol!  (I haven’t been able to drink more than a glass or two since September 2011.)

This is my 100th post.  I’m glad I was able to make it all about a deep and meaningful word.

A Change in Medication

French Word(s) of the Day: la stérilité (la stare-ill-ee-tay)- sterility

After my fabulous, late-night fiascos, my doctor has decided that CellCept is a bad idea.  Apparently, getting sick every night isn’t good for you.  Who knew?

I stopped taking it, and I’ve been feeling much better.  I’m currently in high spirits- still exercising, eating right, and maintaining an active social life.

Saturday, I had a date with this fine fellow.
Saturday, I had a date with this fine fellow.

Medication-wise, we’re back to cyclophosphamide, a form of chemotherapy.  I’m actually happy with this decision.  The CellCept was not worth the trouble.  I’m not saying CellCept isn’t great for other people, my body’s just not so much a fan of it.

As for what taking chemotherapy will do to my body, that remains to be seen.  I’ll be taking it once a month for 6 months.  It’s supposedly a five hour process each time.  Unlike cancer patients, I probably won’t lose all my hair; but even if I do, hair grows back.

At the end of this, I’ll have kidneys that aren’t being attacked.  I’m super excited about that.

Cyclophosphamide is in the group of chemotherapy that can cause sterility.  Because of this, even though I’m not even in a relationship or even currently contemplating children, I got to speak with a fertility specialist.  (Ah, the fun things I get to do before even turning a quarter of a century old!  If you think it’s awkward having to discuss your relationship status with relatives, it’s even more fun with a fertility specialist.)

I won’t be taking a strong enough dose of the medicine (and I’m not old enough) to be in an extremely high risk category for becoming completely sterile.  To help preserve my fertility, I’m going to be placed in a state of menopause for the next 6 months during treatment.  I’ll get to experience the joys of hot flashes, night sweats, and moodiness that will surely make me a pleasure to be around.

You should all be warned that I’m planning on throwing this into a lot of future conversations to make people feel guilty.  “You’re having a bad hair day? Yes, well, it’s not as hard as going through menopause- TWICE.”

Life’s not about what happens to you; it’s about how you use those experiences as automatic trump card.

The Perfect Kale Chips

French Word(s) of the Day: le chou frisé (lay shoe free-zay)- kale

Rocio and I have been trying to perfect kale chips since basically the first time we ever tried out our oven, and tonight we had success!  I’m not going to say how many attempts this has taken.  It’s not because I’m embarrassed; it’s because I actually have no idea.  More than 5 and less than 300.  That’s the normal range, right?

Ingredients:

  • Kale (cut into chip size)
  • Olive Oil
  • Garlic Powder

Directions:

Mix the kale, olive oil, and garlic powder in a bowl.  The kale only needs to be lightly coated with the oil and powder.  Next, spread the kale as thin as you can across a cookie sheet and bake it for 10 minutes at 450°F.

 

Kale does have some sodium, so these are low sodium rather than no sodium.  But still- sweet deal.  For other nutrition information, you should use Google or a nutritionist.  I am neither.

Kale Chips

Week One

French Word(s) of the Day: plus tard (plew tard)- later

Thanks for the kind words, everyone!  This blog is intended to keep everyone curious informed.  If anyone asks how I’m doing, please feel free to send them this link.  They’ll probably say, “Can’t you just summarize?  Reading all that sounds like a lot of work.” But it exists!

The first week of strong medication is officially complete.  It wasn’t the complete and total success they were hoping for.  I spent the first four days getting sick every single night, so they took me off the CellCept for a bit.  (How excited are you all to currently have that image in your heads?!  I hope you’re not reading this while eating.)

They’re not sure if I caught a bug or if it was the medication, but we’re going a more gradual route for right now.

Don’t worry everyone; I’ve had my flu shot!  No more hospital visits for Meghan.  The last time was enough for the next few years, I should think.

I’m incredibly stubborn, so I’m refusing to let my medications take over my life as much as they’re trying to.  I’ve started a diet and exercise regimen to counteract their effects.  As it’s the start of the year, I’m pretty sure everyone in the office just thinks I’ve just made really intense New Year’s Resolutions.

The diet will be discussed at a later date in case there are any fellow Prednisone users out there interested.  (Spell check wants to change “Prednisone” to “prisoner.”  I think that’s a fairly accurate change.)

I’ve been feeling much better these last few days, and I’ve been pretty active.  I even made it to Pilates class yesterday and the gym today!  Even though it’s not on the diet, I did have some cake this weekend.  It’s never a bust week when there’s cake involved.

m&r's cake

Biopsy Final Results

French Word(s) of the Day: les maladies auto-immunes (lay mal eh dee oh tow ee mun)- auto immune diseases

Many people think lupus is Latin for “wolf,” but the actual translation is “complete and utter confusion.”  It’s appropriately named, as doctors still only have vague ideas about it and most ordinary citizens know it as “the disease that no one actually had on House, MD.

It should come as no surprise that my results caused utter confusion.  I got a message from my doctor that started with, “Your report shows a focal proliferative form of lupus nephritis progressing towards diffuse proliferative form with membranous nephropathy” and ended with “Please let me know if you have any questions.” (I assume she actually meant “Please let me know if there’s any part of this that you DON’T have questions about.”)

I experienced a panic that I haven’t felt since my last biology test.  Am I supposed to know these words?  Why isn’t this multiple choice?  I’m POSITIVE that wasn’t on the study guide.

Diagnosis:  After speaking with her for about 30 minutes today, I have a better idea of what this all means.  My kidneys are being attacked; they’re inflamed.  They still work like proper kidneys, so that’s very good news.  We need to treat my lupus to prevent damage.

Treatment: They’re holding off on any chemotherapy.  Sterility is a possibility in the type I would have to take, and they don’t want to take away any chances I may have to reproduce.  (My future children are vital for the continued improvement of humanity.)

I’m going to be put on a high dose of steroids and an immuno suppressant called CellCept.  This drug is typically used for transplant patients.  They’re the types of drugs with a list of side effects 12 miles long, so we’re in for a fun ride, everyone.

They’re going to see how well I do on these drugs in three months, and then reassess whether or not I’ll need chemotherapy.  (They’re crossing their fingers for “no.”)

If you want to be as confused as I am: I have class III, IV, and V of lupus nephritis.  That’s right; you can have more than one at the same time.  Class VI is the worst class- it means you’ve got permanent damage; I do not have class VI.  Honestly, I still don’t understand what all the classes mean.  If anyone knows, feel free to share your kidney knowledge with us.

This site was helpful to me if you want to learn more.  Do not go to Wikipedia.  It’s so unclear that I suspect my doctor had a hand in writing it.