Change of Plans...

Update number... whatever, I don't even know. Numbers are hard.

This has been the week where I go to the Avera medical complex every day. I had my port placement surgery on Monday morning at 7:30 am. It was quick and easy, and they had us leaving the hospital by 8 am. No intubation, just a heavy IV sedation. I got a nausea patch, which mostly just made me really thirsty and gave me a sore throat.

I went home, watched a movie on Netflix, took a nap, ate some lunch, then went back to work at 2:30, taught a short handful of lessons (if I rest my left elbow on my knee, I can still use my arm to play piano!), then sat through a student recital hour. Really hard not to fall asleep when on the pain meds! I had a rehearsal that evening that was challenging because my throat was sore in an acid-reflux-y kind of way. (Fine the next day)

Tuesday,  I woke up feeling a little stiff in my surgery area, but used no pain meds. Didn't hurt that bad. Just had to baby my left arm. I taught a couple lessons in the morning, then went and had my first MRI (Spine) and an Echocardiogram. Then I went home and taught a few more lessons, took Maia to school for a play that she's on the tech team for, and participated in a creative service planning team meeting for church.

Wednesday, I got to start the day with another MRI, this one on the abdomen and pelvis. They used my new port for the contrast dye. Worked like a charm, and I didn't even feel the needle poke, just the pressure of pushing on the port against my tender chest wall. I got to listen to music for this MRI (the other one, I only got earplugs, so I worked on the "Steel Magnolia" lines I could remember), and I had breathing instructions for this one. Turns out, I'm really good at breathing and laying still. We've all got gifts. This contrast dye did not make me vomit, but my chest and neck are slightly rashy today. I'm guessing this is a weird reaction to the contrast.

After the MRI, I taught lessons from 10:30-5:30, then hosted small group, and skipped church choir to go to the play at USF because I was sure I wouldn't be able to go any other night. Bad night to skip choir! They loaded Matt up with freezer meals for our family! How kind! I love our new church at Asbury!

This morning (Thursday), I REMEMBERED my appointment with Dr. Krie, my oncologist, so I did my hair and makeup and looked nice to make up for last time. (She said, "That's more like it...") I told her not to make me cry again, because I wouldn't have time to fix it before work.

She had the test results. Here's the good news: Suspicious spots on liver are for sure cysts, and nothing to worry about.

Bad news: The bones are not so good. This is what the report says:

IMPRESSION: There are multiple T1 hypointense lesions involving most thoracic vertebral bodies as well as the C7 vertebral body. Several lesions demonstrate enhancement and T2 hyperintense signal. Several lesions demonstrate peripheral T1 hyperintense signal and T1 hyperintense enhancement. Additional lesions are demonstrated throughout the lumbar spine and within the sacrum. Several demonstrate sclerosis on comparison CT examinations. Finding are most suspicious for metastasis.

The thoracic cord is normal in signal intensity. There is no abnormal enhancement of the cord.

So it looks like it's in my spine. From C7 (bottom of neck) all the way down to the sacrum. But not in my spinal cord.

Woof. This changes things.

She is pleased to not see it in the liver. Let's remember that.

She wants a bone biopsy before we start chemo, so we got one scheduled for tomorrow (Friday) afternoon. She insists on seeing cancer cells under a microscope before treatment. But this report gives every indication that it will be cancer. I will find out the results on Monday afternoon. One thing they will check for is whether it has the same markers as my breast cancer or if it is a different one altogether.

So I will still go in for labs and chemo education tomorrow morning, but instead of starting chemo, I will have a bone biopsy.  Probably in the sacrum because there is no spinal cord there. This sounds horrible. I am requesting as much sedation as they will give me. Maybe I can just go to sleep and wake up with a sore back. 

Chemo starts the same way, whatever the results are, but we will now start on Friday, November 23. Can anyone tell me what's important about that day? That's right. It's my 47th birthday. I plan to wear my tiara and be treated like a queen. Gifts accepted.

It's my birthday. Fix me.

The regimen will be 12-18 weeks of low-dose chemo with a combination of Taxol, Herceptin and Perjeta. Taxol will be given every week, Herceptin and Perjeta once every 3 weeks. 

They have found that immersing the fingers and toes in ice water during infusions significantly lessons the occurrence of neuropathy and improves nail health, so I won't be getting much work done on my laptop on treatment days. Sigh...Netflix it is!

Assuming that the spine has cancer, I will no longer have to do the more aggressive AC chemo after these 12-18 weeks. I will move to Herceptin/ Perjeta once every 3 weeks for at least 2 years which have less side effects. But hey! I won't be dealing with the unknown of a new chemo regimen right when "Steel Magnolias" opens. :) 

They will still yank my ovaries (probably in the summer sometime), and will put me on an aromatase inhibitor, which blocks estrogen from the other two sources in the body: adrenal gland and fat cells. This means permanent chemically induced menopause. I like that the hot flashes will start in the winter. (I literally ALWAYS look for the bright side).

There is every indication that I will easily get another 5 years of quality living out of this treatment, and there are new advances being made every day. The study that proves its effectiveness is called the Cleopatra Trial. I have no idea why, but I love it! That woman was fierce!  I told Dr. Krie I might have to get a special wig in honor of that awesome name.

I will still lose my hair during that first 12-18 weeks. There is an option called Dignicap that ices your scalp during treatments (same basic concept as icing the fingers and toes). But you can't style your hair, blow dry, even barely comb it the whole time you're in treatment. Basically, I'd have bad hair days for like 3 months. I'm not about that life. I asked if I would get a new wig, and she said yes. You never have bad hair days with wigs.

Many of you know that Matt & I have been trying to follow the Keto diet. He's better at it than me, but I got serious about it after diagnosis, so I asked her about it and she says she supports it, but maybe just restrict carbs and add in fruits during the 12-18 weeks of chemo because the body can't really handle both ketosis and Taxol. We would be so grateful to anyone bringing meals if you would keep carbs to a minimum.

And exercise would be good, but no pavement pounding (Ha! As if!). Yoga is a great idea. Both this diet and gentle exercise will decrease inflammation, and that is a great idea when fighting cancer.

I'm surprisingly calm about all this. Thank you to everyone who has been praying for us this week. You are helping us in ways we can't explain, but it makes a difference.