Wednesday, April 3, 2013

Sailing...

I feel as if I have been put on a very small boat, and set on a river against my will. I did not choose this boat, this river or the destination, but I must go. I have no choice. I am the only one in the boat, though I sense God's nearness with every movement of the current. I can see thousands of friends and family cheering me on from the shores. Some are also in boats of their own, and I cheer them on their own journey, which looks different than mine. My family walks along the banks, never losing sight of me. Reaching out and holding my hand when they can. The river seems so small at first. Very calm, I can hear the roars of love and encouragement from the shores. It's actually very pleasant. But up ahead are rough waters. Living waters. Scary waters. There are many hidden dangers. Others who have been studying this river for years are guiding my little boat, and I have to trust that what they say is true. I have one little paddle. It's not strong enough to turn my boat around and paddle against the current. All it can do is act as a rudder and point me continuously toward the Light. There is hope at the destination. There is healing. There will even be joy in the journey, if I have eyes to see. 

So, I don't think I'm going to get to be as granola about this as I would like to be. In the last week, I have had time to come to grips with the fact that like millions of other survivors out there, I am going to have to suffer before this is all over. I had kind of hoped that I could skip over the suffering part of this journey, but due to the aggressive nature of a HER-2 receptor on my cancer cells, that seems like it's not an option.

Today was a long day for me. Fortunately, it was a day I don't normally teach many lessons, and didn't have to miss any. I started out by going to the hospital at about 7 am to have a breast MRI. That was weird. I lay facedown on a pretty cushy table, with two holes cut out for the area in question to hang down through. They put me in position, put headphones on me (I had given them my iPod filled with music I like), then told me not to move. It wasn't scary or anything, but it did seem pretty surreal. Kind of like 2001: A Space Oddessy. Everything in the room was white, I was rolled into a big white chamber, then over the soothing sounds of Gungor, Nora Jones, Nichole Nordeman, Owl City, and John Mayer, I heard these amusing laser beam sounds. I swear, it was like being shot at by fake lasers on Lost in Space. Like I was on a really lame Disney World ride or something. Then they told me they were putting the dye into my veins, and I could feel it pool right at my clavicle. Thought I could almost swallow it. I started to imagine that my teeth were glowing and my breasts were a multi-colored map of veins. Probably nothing in reality like what really happened, but I have a pretty active imagination...

After a half hour of that, I had some pretty awesome pillow marks on my face:


Next, I went over to the Prairie Center, and got another ultrasound done. These two tests were checking to make sure that none of my lymph nodes or other breast tissue was effected. I was pleasantly surprised to see a familiar face from Mercy Church, Josie,  as my Radiation Tech expert lady. (I'm sure that's what it says on her name tag.) She was very meticulous in making sure that what Chris, the ultrasound tech, was documenting was meeting up with what she was already studying from the MRI results.  (Amazing, the integrated technology of this place!)

Josie and Chris were both very encouraging that there was no lymph node activity.  VERY GOOD NEWS!

After that, I went down to the lobby, and met my mom and Matt, who went with me to meet Dr. Krie, my oncologist. Up until this point, I have been around all normal people. Well, normal people who are in the hospital for one reason or another, or women getting their yearly mammograms. Walking into the oncology waiting room is like landing on a different planet. (I did have the best hair there.) There is courage in that waiting room. A defiance of this disease. And hope. There are newbies like me, and men and women who are nearing the point where they can add their signature to the Survivor Wall, and everything in between. It's a little unsettling.

Meeting with Dr. Krie was good. I only teared up once! I'm getting so tough! :) ( It's her fault, she asked me how I felt about chemo. She should have known better.) She is about my age, very down-to-earth, and obviously intelligent and good at what she does. She carefully and patiently explained what my cancer looks like, and what my treatment options are. I will not bore you with the details of all this, because I would not be able to explain it very well, but she gave me 2 chemo options, and I chose the less scary one (TCH- Taxotere/ Carboplatin/ Herceptin for those in the know). It's got a slightly lower "survival" rate (meaning NO cancer in 7 years), at 90% vs. 93% on the other course of treatment (ACH).

Let's talk about "survival" for a second. I told her 7 years is not good enough for me. And she explained that I will be trading one year of misery (really only a few months), and after one year the injections will be done, and they will continue to screen me. Once I am clear of this cancer for 7 years, it's not coming back. So after the 7th year, we'll have a Year of Jubilee!!! Until then, there is always that dread.

Some of the advantages of this chemo regimen include that it's easier (easier is good), less dangerous for my heart, and less risk of a leukemia complication. The other regimen has a slightly higher success rate, but is harder, a higher rate of neuropathy (coming back to this), higher risk to the heart and that rare leukemia thing.

I think that the power of the thousands of you praying for me will overcome this success rate difference. I have no fear in taking the "easier" route. Especially because of the neuropathy thing. Neuropathy is permanent nerve damage. Particularly in the fingers. I'm no expert, but when one spends a tremendous amount of time making a living and finding great joy in playing piano, permanent nerve damage in the fingers sounds like a bad thing. Dr. Krie has not worked with classically trained singers before, and is not aware of damage to the vocal cords, but these two things are very important to me, and I would really appreciate your prayers about them.  In short- NO NERVE DAMAGE.

Two other things that will happen. I will lose my hair, and I will go into early menopause. It may be temporary (the menopause. Obviously, the hair loss is temporary). I'm not sure how all that works, but I'm very fortunate that my ever-patient husband will love me through that rocky journey of hot flashes and all the accompanying side effects. Maybe twice. She says I'm going to gain 10-20 lbs. That just doesn't seem right. The only time I ever gained that much weight was when I had babies. We'll just have to see... (determined to not get "matronly.")

So here's the plan. It is scary, but good to know what's coming.

I am starting chemo next week.

Monday, I will go in to have my port put in. This is a short, outpatient procedure. I will be sedated, but it's a light sedation that does not involve intubation (my vocal cords thank them!). I will have to miss work. I have several students scheduled for recital Monday afternoon. :/

Tuesday, I will meet with the chemo teachers. They will explain what will happen during the process. I will also meet with the wig lady. (This could be fun)

Thursday, I will check in at oncology and meet with Dr. Krie, then go to the infusion center and sit around for 3-4 hours while they pump poison into my veins. I am told that I will feel pretty good that day, and the day after. Then I'll feel like crap over the weekend. I'm supposed to play for church that Sunday. Might not be able to. :(

I will have this chemo treatment every 3 weeks until July 25. Then I will recover for a few weeks, and around August 15, I will have my surgery. I am opting for a double mastectomy with reconstruction. I may be fearfully and wonderfully made, but I'm going to be new and improved by the time this is all over!

The reason we are starting so suddenly is so that I can still go to St. Louis with Xander's Lego League team at the end of April. I will have a weekend of blech after each infusion, and the week before I go back is supposed to be a "feel good" week. Unfortunately, during this first round, it will also be the week I lose my hair. I'm going to blame the middle schoolers we're traveling with.

This will also set me up to be able to be back teaching again shortly after Labor Day, so I shouldn't have to miss a semester.

Dr. Krie was interested to know whether I had severe morning sickness with either child (yes), do I drink alcohol (yes, but I don't have to), and do I get carsick (sometimes). These three things seem to indicate that I will be nauseous from the chemo, so she said, "We'll be really aggressive with the anti-nausea meds." (Another area of prayer. I really hate barfing. Who doesn't?)

After this draining appointment, Mom, Matt & I went and had lunch in the cafe on the main floor of the Prairie Center, then Matt went to drive carpool, and I went back up for a quick chest x-ray, where two high schoolers (I swear!) took my pictures. That was really quick, and I was able to sweet talk my mom into taking me shopping for new workout shoes.
I told Mom that retail therapy might need to be a part of my regimen...

The only two things I have any control over during my treatment are my diet and my workout regimen. I have been prescribed 30 minutes of daily exercise. I have never been too good at sticking with a workout plan, but I've made changes to my diet, I have faith that I can do this too. Plus, I might have also acquired a new bike jersey today that matches my sweet new ride:
Now, if the weather would only cooperate!

I have also cut sugars, grains and processed foods from my diet. Lots of fruits, veggies, lean meats, beans, and limited dairy. Dr. Krie was VERY supportive of my new diet, and I have to say, I feel great.  You know, until they start dumping poison into me.

OK, one more story before I close this chapter. On Wednesday, I ran across a link from a friend on Face Book, of a local hairstylist, who needed adult female models with shoulder length or longer hair to do a photo shoot of her updo hairstyles. I wrote her quick and said, "Not to play the sympathy card or anything, but I was recently diagnosed with cancer, and will be loosing my lovely locks soon. Can I be in your photo shoot?"  She agreed, so on Wednesday afternoon, the day before chemo begins, I will be doing a modeling session. It will be nice to have professional quality photos of my awesome hair before it is gone. Kind of a nice little blessing.

7 comments:

  1. I love your posts. I am so glad you are blogging through this experience!

    If you would like some professional family photos done before your hair is gone let me know. I'd be happy to do a free session this weekend for you guys!

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  2. You are awesome ... but our God is even more awesome. :) Praying you through this ride.

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  3. Sounds like a very productive meeting and treatment through July is definitely doable :) (5 rounds??). Also its super helpful if you like your doctor.

    I am envisioning a fancy new wig cut maybe you should be a red head? I never wore mine, it was itchy and since I have a lot of texture issues, I don't like itchy. Maybe that has improved in the last 20 years too :)

    Be sending good thoughts....YOU CAN DO THIS!!!!!

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  4. Amy you just beam with beauty... your face, your personality, your voice, your words... If anyone can go with out hair it is you! Thank you for sharing your experience.

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  5. I love you, sweet friend, I miss you, and I hurt with you. I also want to say no one makes your cranberry salad for Thanksgiving. No one. I tried and made a sour, soupy mess. It wasn't the same. So, who is traveling this November??? Praying lots in IN with lots who love and miss you.

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  6. Amy ~ Your darling Mom shared your blog and I am following you from Yankton. You are a beautiful, brave, blessed young woman - and I am storming heaven with prayers for you and your family. We are trusting God for a FULL recovery!

    Love to you
    Julie Holst

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  7. Amy, I will be praying for you in Florida--and I'll put you on my church prayer list! I believe that, with all the friends, family, and even complete strangers praying for you, we will MORE than make up that 3%. I am all caught up on your posts now. Your beautiful attitude amazes me. I look forward to hearing more about your journey, and I can't wait to hear that the cancer is gone.

    Sending love to you and your family,
    Tamara Bahrenfuss Golden

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