Chemo Session #6

For this session I decided to wear my "Fight like a Spoonie" shirt.

The term "spoonie" comes from an article I read a few years back that was sent to me from my dear friend, Alisa.  The Spoon Theory, written by Christine Miserandino, is the best explanation of what its like to live every day with a chronic illness.  If you have never read it, I highly encourage you to, you can find it here, But You Don't Look Sick.

After last session, we met with my nephrologist one more time to discuss our new plan of attack before going into this session.  I asked about having a port or even a PICC line put in to save my veins and that was declined.  Dr felt that the risk of infection was too great.  He was not sure my body could fight it off and he said that was just not a road he felt we should go down right now.

Then we had to figure out if doubling the dosage was going to be enough.  After looking at my labs a little more closely, he decided to TRIPLE the dosage but lengthen the time in between infusions, 4 weeks instead of 2 weeks.  And he said to expect at LEAST 3 months, but usually patients need 6 months, could be as long as 12 months... let's hope not!

He also decided to simultaneously taper down my prednisone.

Now if you've ever had the pleasure of being on prednisone, you know changing dosage is rough on your body.  And to do this while increasing the chemo at the same time... Brian and I immediately got nervous... we voiced our concerns.  But after he explained that he felt the high dosage of prednisone could also be a factor as to why our previous treatment was not as effective, we consented.

Basically, he warned us that this would not be easy on my body, but it was necessary because what we've been doing the last 3 months is barely scratching the surface.

He also told us to expect to be at the hospital quite a bit longer since I would be receiving 3 times as much.  Luckily for me, I have an amazing husband who doesn't mind hanging out during my treatments.

He's such a trooper.  He never complains.  He always asks if I need anything and he always asks my roommates throughout the day if he can get them anything.  I don't think he knows just how much him being right there beside me, means to me.  

He is my rock.  

He is the one who sees the pain in my eyes, 

while everyone else still believes the smile on my face.

He is the one who sticks by me through the 

symptoms, the moodiness, the fatigue.

He is the one who loves me and doesn't judge me 

for what I'm going through or how I'm handling it.

It's not easy watching the one you love be in pain 

and not be able to help, but he sticks by my side and never waivers.

He's amazing.

Simple as that.

I had 2 different roommates on Monday.  Both were ladies fighting different diseases.  Both had amazing stories of overcoming odds and persevering through some difficult times.  Sometimes I think the best part of these treatment sessions are the people we meet at the hospital.

After a very long day, we were finally released.  I definitely noticed the effects of the higher dosage.  I felt nauseous, extremely tired, and had the worst headache!  For the following 36-48 hours I didn't move, unless it was to take my lupus meds or more pain meds.

THIS is exactly how I felt.

The rest of this week went pretty well.  Our Nanny made sure the girls were able to enjoy the great weather we had.  Made a visit to the Washington State Spring Fair with our cousin.  Had a few picnic lunches outside, fed the ducks again at the local pond and Broo went through a few bottles of bubbles.  And Brian even got our garden planted!

I love seeing their smiling faces.  It makes me feel like we are doing a fairly good job of shielding them from the stress and seriousness of what is going on.  

Emma has a pretty good idea of everything.  I'm very honest with her about things because she's just like me, as long as she knows the situation, she can handle it.  If I were to hide it from her, she would only worry so much more.  So I answer her questions and talk about what the chemo is doing and why I need it.  And she, being the "old soul" that she is, seems to be taking it all in stride.

Brooklyn is such an awesome distraction and great comic relief. She is always trying to get us to laugh!  And is quite successful!

And when I need quiet time, they always find some way to entertain themselves.  I was able to catch this sweet moment of them on the couch... I figured I might need it in about 10 years when they are fighting constantly over clothes, shoes, boys... who knows what else!

I see my doctor in about a week to run more labs and see how my body is reacting to this new plan.  My next session is Friday, 15 May.  WHICH, coincidentally, is the same days as:

So if you want to join me, I'll be wearing purple that day!  Feel free to wear your favorite purple shirt as well!  And we can tackle my next session together!

Lupus is Latin for "wolf".

Until my next post, thank you all for you prayers, love and support!

xoxo

Bev