Feb 25/26 Weekend

I've fallen off the blogging bandwagon recently. Sorry for going AWOL on you.

After the first week of Cisplatin fatigue, I began to gain my energy back and have been enjoying living life since. Truly, this first round of the clinical trial has been amazing in a positive way. I was ready to endure its harsh effects (nausea, vomiting, etc.) and was lucky that the heavy, incapacitating nausea and vomiting never hit hard. I felt extremely fatigued for a good week after the first infusion, and am still experiencing high-pitched tinnitus (ear ringing). Other than that, I've bounced back nicely. It felt so great to be able to go to Pilates class last Monday and yesterday. If I can do it - I want to!

We made a mini road trip down to Colorado Springs to meet up with James Rollins, my supervisor & mentor at a previous job in Washington. We hadn't seen him in nearly 8 years! It was great to meet up in person, get caught up on each other's lives, and share a meal together. Thanks for fitting us in, James!

My view at lunch. Not too shabby!

After we parted ways with James, Joshua and I decided to go to Garden of the Gods. We walked a few trails, took some pictures, and enjoyed the plentiful sunshine. What an amazing day! Pikes Peak was in full view, too.

People were climbing the rock in the background!

One of the many red rock formations in the park.

Enjoying an afternoon away from home together.

These fuzzy things looked like magic feathers to me.

You can see beauty not only looking up,
but also when you look down.

The tree in this picture amazed me. The rock formation is quite high and doesn't look like a hospitable place to grow. Still, a tree of this size speaks to Mother Nature's tenacity. Being outdoors, away from home, and getting Vitamin D through the "old school" sunshine method was the right thing to do last weekend!

Eat To Starve Cancer: Stopping Angiogenesis at the Root

William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.

Eat To Starve Cancer MindMap

While the presentation isn't mind blowing, it is most interesting that the study of angiogenesis reinforces the common theme between diet and disease. Simple changes to our eating habits, incorporating disease-fighting foods and limiting processed foods are the basic keys for using nutrition to strengthen the whole body.

The Neighborly Thing To Do

image of Fred Rogers, the consummate neighbor,
from Snappy New Day blog

We are fortunate to live where we do. After carefully seeking out the state we wanted to call home and figuring out a list of non-negotiables for our house, we zeroed in on Centennial, Colorado. Once we stumbled on our current neighborhood, we didn't want to let go. It is so reaffirming to live on a street of caring individuals. Our neighbors have helped with snow shoveling, preparing food, taking me to appointments, showing solidarity with buzz cuts, and other "neighborly" ways of showing care.

Only recently have we gotten a taste (literally!) of what the entire neighborhood can do:

A neighbor who recently found out about our "health adventure" (Allison) asked if we'd mind sharing our story and needs with the babysitting co-op. We wrote up a few short paragraphs describing what it's been like for us since my diagnosis, and Allison sent it to 40+ other homes in our neighborhood that are part of the co-op. I was aware of the co-op back during our home search and was intrigued at becoming part of it once we had a child. What I wasn't aware of was that this group of folks does much more than time-share responsibilities for childcare. They provide help to other families in the neighborhood that are in need. I guess we fit that bill - because soon after she sent the email out, the Helping Hands site Joshua set up began getting new sign-ups daily to help with meals!

All of this is overwhelming sometimes. Not just walking through this experience, but actually processing the little ripple effects that happen all around us because of breast cancer. I am so deeply moved by people, not having met either of us before, signing up to bring us home cooked meals. What a relief it is for Joshua to not have to come home after a day's work and cook for us. What a blessing it is for me to not have to focus on cooking (not that it is a strength of mine anyway).--Hey, I'm being honest. I am so grateful for Allison linking us up with this group of caring individuals and for their collective help.

In my healthy future, I hope to pay it back (or forward) to others. In times of need, getting help is indispensable. Learning to receive it can be a learning process. We are learning. We are accepting. And we are most gracious.

Thank you.

Into Week 2 of the Trial

We are into the second week of the first infusion and things are going well. Laura says the worst of it currently is the constant ear ringing, which drives her crazy.

Her initial nausea from the first treatment has for the most part subsided and Laura has been weaned off of all the anti-nausea medication for this first round. She is getting stronger each day since the Cisplatin administration, although she fights fatigue and has trouble sleeping more than 3-4 hours at a time.

This graph shows the typical blood cell count during a Cisplatin treatment. The blue line shows the  blood cell count, which dips down to its lowest point (nadir) 14 days into treatment and begins recovery on day 21.

Day 21 is when the next infusion is scheduled with the idea being that the chemotherapy is a cumulative process meant to have the greatest effect it can without getting her blood cell counts into a dangerous range. The blood cell count is not a direct indicator of other symptoms, but you can imagine if they are low, then the rest of the body is feeling it.

We don't expect this first round to be anything like the next, but it has been a real blessing with how well it is going. We were all astonished with how well Laura did through her first chemo treatment in late June of last year, but the cumulative effects of the drugs did catch up to her by the second treatment. Right now we are all just so very thankful that she is well and not experiencing extreme nausea or pain.

Compression Garments 101

Sleeve/glove combo.

I now have my compression garments (also known as a sleeve, glove, and gauntlet). Luckily, I have not been diagnosed with lymphedema; for now, these items are for preventative purposes.

Each garment provides graduated pressure along my hand/arm to alleviate symptoms of lymphedema (swelling, lymph fluid buildup). Below, I've pasted in some information about lymphedema. Check out Physical Therapy (PT), a past blog post with information about my lymphedema risk, overtaxing my arm, and Brianna the lymphatic system guru. Also, if you're a fellow BC survivor, please consider physical therapy/lymphatic massage and read this article.

Lymphedema may be inherited (primary) or caused by injury to the lymphatic vessels (secondary). It is most frequently seen after lymph node dissection, surgery and/or radiation therapy, in which damage to the lymphatic system is caused during the treatment of cancer, most notably breast cancer. In many patients with cancer, this condition does not develop until months or even years after therapy has concluded. Lymphedema may also be associated with accidents or certain diseases or problems that may inhibit the lymphatic system from functioning properly.
...
In women, it is most prevalent in the upper limbs after breast cancer surgery and lymph node dissection, occurring in the arm on the side of the body in which the surgery is performed.

~taken from wikipedia

Wrestling to get the sleeve on.
It's tight and needs to be placed from where the wrist bends
to the top of my arm.

Correct placement of the sleeve.

The glove.
Not too comfy, but good to have.
Especially for future airplane trips.

The gauntlet looks like the glove, except the fingers aren't individually wrapped. I approached my continuous jog the other day with more confidence by having the sleeve and glove on. Next time, I'll just wear the sleeve and see how my arm reacts to the exercise and less compression. The symptoms I feel when my arm is overtaxed are: numbness in my right arm, tingling in my right hand fingertips, heavy arm, poofy arm, or achy arm. I thought it sounded funny to have people say (before I had my surgery) that it felt like your arm is congested, but that's a pretty accurate way of describing how it feels.

image from: http://mysassysleeve.com

I haven't seen the My Sassy Sleeve up close and personal yet, but they look like a fun way to doll up the otherwise...um...plain look of lymphedema sleeves. They are sold out of a nearby lingerie place called Pampered Passions. If I get to the point where I have to wear mine for more than just "preventative" purposes, I might look into one to jazz things up.

image from: http://mysassysleeve.com

My Freaky Valentine

My freaky valentine.
He's crazy - and all mine!
Who's yours?

Much love to all of you, dear blog readers. And may you know you are loved today!

So far, I'm floating along pretty well after yesterday's infusion. I'd give yesterday an 8 out of 10 rating (with 10 being normal). I did manage to sleep for 4 hours straight! Pretty good while pumped up with steroids. I also got 2 more hours from 7-9am.

Today, so far, I'd rate today at a 7-8ish on the 10 point scale. I'm FULL of anti-nausea meds. To the brim! I mean, seriously. (Anti-nausea a.k.a. butt clampers to me.) Luckily, my good friend, the anti-constipation fairy, visited me TWICE already today. TMI? Get used to it.

Today's agenda so far has been mild. I'm happy to say that I walked 3+ miles on the treadmill, which felt great and also helps with digestion. (hint, hint) Mom is hanging around with me today and tomorrow to make sure I don't fall into pukey-land all by myself. It's nice and comforting to have her company while going through this first cycle. Even though I know the first cycle is by far the easiest!

No big plans for V-day, other than saying I love my husband beyond what I'm able to convey through words. I'm fighting for me, but also for him. I love you, babe.

Go Cisplatin!

Really wanted to share part of an email I received the morning of my first Cisplatin infusion. I hope you all see the humor in it, too. I loved it!
Thank you, Sarah.

------------
A little "Go Greased Lightning" parady came to mind this morning--sorry, but I just had to go with it ; )

Go Cisplatin, you really know how to kill all the cells.
(Cisplatin, go Cisplatin!)
Go Cisplatin, you really know how to do that well.
(Cisplatin, go Cisplatin!)
Your body's clean,
(uh-huh)
The cells will scream!
(uh-huh)
Cisplatin...Cisplatin...Cisplatin...Cisplatin...
Cisplatin...Cisplatin...Cisplatin...Cipslatin...
Cisplaaattttiinnn!
-----------

For those of you that are a little...uh...rusty on lyrics or cadence of the song, here's a good reference for you:

Trial Infusion #1

Took this photo on the way in this morning for my first cisplatin infusion. My bloodwork was checked and I passed with flying platelets! I'm anxious about some of the coming days, but let's see what happens and work from there.

Please ask/pray/wish for the anti-nausea fairy to visit me. And the anti-constipation fairy while you're at it. Hey, I'm all about full disclosure!

-Laura

For those Inquiring Minds...

We'd like to answer a couple of questions that have been posed regarding the clinical trial which begins Monday February 13, 2012:

Is Cisplatin what Laura has taken before or a completely new drug?

Yes, Cisplatin is an entirely different drug. From June through September 2011 Laura received a combination of drugs, Cytoxan and Adriamycin, and then Taxol -- the standard therapy for treatment of triple negative breast cancer patients with an aggressive tumor. When a very small amount of residual cancer cells were found in Laura’s breast tissue at surgery, her oncologist recommended this Cisplatin/PARP inhibitor clinical trial as a follow-up option. Because Laura was randomly assigned to the chemo portion only of this clinical trial, she will receive Cisplatin, a platinum-containing compound which has been used for a number of years for stopping/slowing the growth of cancer cells in many types of cancers.

When you say "final blow," does this mean there are no more drugs/treatments after this round?

For this part of Laura's medical journey, yes - this is the final drug/treatment she can receive before the "wait and see" period begins post-treatment. Cisplatin is not approved to use on patients without metastatic cancer and it has a proven track record of killing the type of cancer cells that were in Laura's body. Were it not for this clinical trial, Cisplatin wouldn't be administered at this time. Laura, her medical team, and her family all think that doing more now can only help. That, and it will give her the mental boost that she's done everything she can to show up to this fight with "guns blazing!"

Hope this answers Mandi's questions. Thanks for asking. Does anyone else have questions? Feel free to ask and we'll answer as we're able.

Thoughts

It's weird to know that I'm headed for more chemo in <2 days. I seem to be in a recursive journey where my body is feeling good and recovering well - so it must be time to bring on the next round of this spar with cancer. On one hand, I feel great and am dragging my heels about doing it; on the other hand, I firmly believe this is what needs to be done at this point in my treatment, so let's get this stuff started already!

There lies underneath a sense of dread, fear, and anxiety before each new step in the journey. How will this go? Will my body tolerate things well? Is this the right thing to do? What if...? These thoughts swim to and fro and sometimes make my stomach flip turn.

This journey is not just a test of what a body can take, but also of what a mind can handle. Wrapping my head around being diagnosed with breast cancer was the first step. There are physical limitations - some I must accept; others require daily work to improve. I've learned/am learning to ask others for help and voice my needs. There is a lot of introspection involved with diagnosis, sickness, treatment, surgery, and life after your medically active "fight" is over. Much of this journey is a brain game. I've done my best during radiation and post-radiation recovery to fortify my mind by revisiting meditation, continuing therapy, talking openly and honestly with Joshua, and by "dancing in the rain."

A short video I took on our latest snowshoeing adventure.
We went snowshoeing on our neighborhood streets and in the nearby park.
It was awesome!

When my body gets weak during chemo and my mind begins thinking tricky little thoughts, I'm going to have memories and pictures to reflect upon. These will remind me what I was capable of in early 2012 - just 4 months after my last chemo treatment and 3 months after surgery. Some great early 2012 memories include:

• driving
• walking and jogging
• snowshoeing
• participating in life in as close to normal as I can recall since May 2011
• getting together with friends and family
• meeting with YES! group members
• swinging my head back and forth and not getting nauseous
• practicing pilates and yoga
• having hair (and getting a trim)
• feeling strong and well

Joshua and my mom will upload posts on what's going on/how I'm doing/whatever they'd like to blog about that's relevant. These coming weeks may not be a good time to be on the computer much, so know that I'm just going through things if I'm not blogging or responding to emails. Now is the time to focus inward on healing.

Group A it is...

I've been randomized to Group A for the clinical trial. This means I will receive cisplatin only. Treatments are every 3 weeks, starting on Monday.

Still Waiting...

No news yet about my randomized placement for the clinical trial. I was told yesterday that I would find out today. Or Friday. Didn't want anyone to think I was withholding information! Either way it works out - Group A or Group B - I'm okay with it. The point is that I'm in the trial and will receive a drug that should destroy any active cancer cells, if there are still some in me. The final blow I can actively (medicinally) deal to my adversary.

Another Chili Day

Today's high is supposed to be 25 and it's snowing again. Brr - that's chilly! Time to stay indoors and enjoy warm food and drinks.

Sitting around waiting to hear about yesterday's test results, whether I'm part of the trial or not, and - if so - which group I've been randomized into doesn't sound good to me. Time to busy myself with setting up future house cleaning appointments, organizing my "cancer handbook" binder, and doing top secret preparations for Joshua's birthday.

---busy and then a phone call---

It's now official: I am part of the clinical trial and will begin Monday morning as scheduled. No word yet on which arm of the study I'll be in (Group A or B); I should get a phone call about that tomorrow. So hang on - here we go, folks!

Next Steps

Thought I'd break it down for you all via headings. I like to be organized that way.

All filled up:

Immediately post-fill.
Happy camper!

As of January 30, my expanders are all filled up!
Right: 695cc, Left: 590cc
I may need a top off before surgery on the left side. If that's the case, it will wait until after the clinical trial is over. For now, I'm close to "even" and feeling groovy.

Lab rat:
Today I go in to sign consent forms, have bloodwork done, an ECG, and another heart test of my physician's choice. All day at the hospital - boo. After the tests are in and I get a "pass" to be part of the trial, I'll be randomized into Group A or Group B. I really hope to be part of Group B be in the group that is best for me long term. As long as my tests come back with good results, infusion #1 of cisplatin will be Feburary 13 at 8:30.

Post-radiation stuff:
The swelling, redness, and itching have let up considerably in the last week. Even the little gnat bite-like bumps on part of my chest and back are nearly all gone. Yay! Radiation (not only during, but also after treatment) can cause skin and muscle to become "stuck" and not pliable. So along with daily lymphatic massages, I'm also massaging the skin that was radiated each day (I'm supposed to do 100 circles around my breast each day). Once or twice a day I also give the radiation area (breast, underarm/side, and neck/back) extra lotion to soak up. This should help my skin become and stay "happy" post-radiation.

Lymphedema sleeve, glove,
and gauntlet packages.

Workouts:
It feels great to gradually increase the intensity of my workouts. Last week, after picking up my lymphedema sleeve/glove/gauntlet combo (more info on those to come), I committed to jogging a straight mile on the treadmill. Mission accomplished - plus some. I jogged 1 mile, then walked fast for a 1/2 mile, and then decided to bust out another 1/2 mile. Both jogging intervals were done between a 11-12 minutes per mile pace and the entire workout was just over 3 miles. My arm didn't have any reaction to the increased intensity, so next time I jog I'll just wear the sleeve and see what happens. It is so majorly exciting and thrilling to be able to jog again!

Go ahead, chuckle at the picture below. How could one resist? Not wanting to upset my skin, I decided to wear a jog bra on the outside of a cotton t-shirt.

Joshua snuck away and got the camera-!

Germany Represents!

At long last, Anneliese (Joshua's mother - my mother-in-law) came to visit. Joshua saw her in early December when he made a trip to Washington. I hadn't seen her for a year.

We usually play games when the Sr. Aysons visit. It's a good way to enjoy some time indoors together - as well as to compete. I had beginner's luck with Niners. But beginner's luck doesn't last long.

Playing Rummikub and Niners together.

Someone's always got to be the "different" one...

Joshua was proud to share his mixology creations with his mom. She watched him make it (this one consisted of cucumbers, kale, ginger, chard, 1 stevia packet, a splash of apple juice, and some ice) - so she knew what was in it. (Hey, we are all about full disclosure here.) I made SURE to have the camera around for the first big gulp.

Hey, hey, hey! Lookie here.
Anneliese is trying a green shake!

Down the hatch!
Hmm...bitter beer face.

Next up: homemade kombucha tea. Joshua now has two scobies downstairs. They are in two gallon containers and make the laundry room smell a bit like vinegar. I'm egging him on to talk about his scobies and kombucha in a future post. Anneliese needed something to help wash down the green shake. I think the 'bucha tea did the trick.

Anneliese likes the homebrewed kombucha tea,
a la Joshua's scoby plantation in the laundry room.

We also hit up downtown Littleton one afternoon. We went into several of the shops there - mostly looking, but we did some finding, too. It was great to be outdoors, walking around together, and window shopping. When we were through, Joshua volunteered to go get the car and Anneliese and I sat down facing west and got to view a most bodacious sunset.

We enjoyed a beautiful sunset!

On Anneliese's last eve here in Colorado, we went to mom's place for dinner. She made a butternut squash/spinach/pearl barley soup, salmon, veggies with turmeric, wild rice, and cayenne salsa. Muy caliente! I enjoyed taking it all in.

Post-dinner conversation at Linda's house.

She who takes pictures is never in them. Boo-hoo. Oh well - I know we had a great visit and am happy you came, Anneliese.

A Big Thank You!

Juli has the cowgirl spirit!
I don't know how she does all she does for herself and others.

Today is a cold, snowy day in Colorado. Today's forecast is for 6-10 inches of snow; I think we've already hit that mark. Tonight, another 3-7 inches is expected.

As I began to make breakfast, I thought I heard a snowplow coming down the street, only the sound kept getting louder and louder. Turns out it was Juli, one of our neighbors, snowblowing our driveway!

We continue to be amazed at the way people have rallied to help us. Juli is yet another great example. I'm not able to shovel, nor am I supposed to use the snowblower, so thank you so much for the needed and appreciated assistance!

That's some deep snow. And it just keeps on comin'.