Boob-berry Bars, Anyone? (It's Chocolate!)

There's a small local business by the name of The Chocolate Therapist in Littleton, Colorado. According to their own literature in the store and on their web site, their chocolate is "handcrafted using all-natural chocolate and health-enhancing ingredients like nuts, spices, organic flavoring oils and dried berries."

When I "graduated" from chemo, my massage therapist gave me an encouraging card and a bag of their 72% dark chocolate couvertures. Boy, what a treat! I hadn't had any chocolate since the end of May! They melted in my mouth and I savored every last one.

So thought I'd do a little plug in case there are folks out there who like chocolate (they have all kinds, not just dark, fyi) and are looking for quality chocolate. The owner, Julie, has a promotion going until the end of the year: for every Boob-berry bar sold, $1 will be donated to breast cancer research.

The Chocolate Therapist
303-795-7913
2560 West Main Street
Littleton, CO 80120

www.thechocolatetherapist.com

The Naked Eye

Turns out, I did lose ALL of my hair. What makes chemo folks look different, I've determined, is our lack of facial hair - especially the eyebrows! When those vacate, one begins looking a bit like a visitor from a parallel universe, if you know what I mean. Case and point: see the close-ups.

These pictures were taken ~2 weeks post-surgery.
Hardly a hint of hair.

No time for eyebrows this day.
But you get the idea.

I look normal to myself without any makeup, but when the total hair loss thing caught up with me (~2 weeks after surgery/6 weeks after my last chemo), I looked weird even to myself. Enter my makeup lesson from the Look Good Feel Better seminar I attended months ago. Time to turn those notes into practical application!

Luckily for us post-chemo folk, the total hair loss days are not long. Just last week, I noticed tiny, mini eyelashes. Not long enough to pull at - not even long enough to apply mascara onto - but they exist! Also, a "shadow" of eyebrows...like I had shaved them off. The hair growing back was just under the skin - and even THAT made me look more human-like than before. Then the stubbles started coming out. It's a slow process, and there's a good portion of me that's reluctant to fully celebrate each hair's arrival. After all, I may lose it all again. Bummer.

Front stubble.

Back [of head] fuzz.

My frizzy, teddy bear-like hair is soft and I'm using an equine shampoo to see if it helps. Yes, this means I'm using horse shampoo. See picture to the right: Mega-Tek is supposed to help revitalize the growth and strength of the hairs. I am glad to see it coming back.

Not only do I feel like I'm gaining strength post-surgery, but I also feel like all of my rapidly growing cells (hair, nails, skin, etc.) are making a comeback of their own. My nails are still frail and were really thin from the chemo, so I'm using a nail hardener to help them along.

My skin is already back to normal everywhere that it wasn't. It's good to FEEL like a human to the touch again.

Thanksgiving 2011

Happy Thanksgiving, everyone. This year it was a small celebration here: me, Joshua, and my mom. We each brought something to the table, which was nice. Technically, I didn't bring food to the table...but I was helpful in setting places, getting drinks, and most of the cleaning afterwards. It is a powerful and positive experience to help as I'm able right now.

I've been reflecting on the past year - in particular the past 6 months. Although there are reasons to feel other ways (which I do on occasion), today I am thankful and would like to share some of these blessings with you readers:

• being married to a wonderful spouse who loves me right back - under construction and all
• my parents working together to help me through this challenge in my life 
• having my mother's steadfast support through thick and thin
• my dad and stepmom who have helped me with occasional "sanity check" phone calls and who have also helped us with cooking meals
• Joshua's parents, who have listened to Joshua's needs and support us from afar
• my medical team doing the best they can to help me fight and win this battle
• kind neighbors that help us in so many ways
• friends that are new in my life and those that have known me for a long time doing what they can to help and show their interest and support
• strangers surprising me with uncanny connections and tales of triumph
• having time to make "the" decision about the clinical trial and whether I'll take part in it or not
• this blog providing a way to communicate directly with family, friends, and acquaintances; serving as a time capsule of sorts about this journey I'm on and some of the particulars involved; and (I hope) aiding someone unbeknownst to me that's also been diagnosed with triple negative breast cancer that wants to know more about the possible journey ahead
• good food - and my voracious appetite!
• my expanding lady lumps

Thanks to all who read this blog. Whether you comment or not, I am amazed at the viewership of these posts, and will continue updating with news when I'm able. If not for cancer, I would not have a blog. So thank you, cancer, for giving me an outlet for writing!

I hope to provide more updates in the coming days/week. There's been a lot of change going on around here...especially in the hair department. More soon!

Music Video

Martina McBride's "I'm Gonna Love You Through It."
This is a beautiful music video that says so much. Wanted to share with you all.

http://martinamcbride.com/media/videos/397/16621

Jeney's Cut

It's been a while since someone cut their hair to look like mine. No surprise there, especially with winter approaching. However, someone did something super specialrecently  that I'd like to share.

Jeney is Adam's girlfriend. Adam is my brother. You've met her before on this blog. In case you missed it, meet Jeney again:

Hello, Jeney!

Jeney grew her hair out extra long so she could donate it to Locks of Love.

Snip, snip!

I believe I'm familiar with the feeling she was having in this picture:

Yes, was too late to change your mind.
It's temporary. And yours is for a great cause!

Isn't she cute? I think the new hairdo is brilliant on her.

Thank you, Jeney, for donating in my honor. I know a person is waiting out there who will be appreciative to receive your locks. Your hair was (and is!) beautiful.

Can you do the Macarena?

I guess that's now the standard question post-mastectomy surgery. That's the first question my general surgeon asked me at my first post-op meeting with her this week! Could I do it? Not so well. But after my PT appointment today, I hope to learn how to increase my range of motion and strength.

More information to come later about the clinical trial. My family and I have some time to think about it; I'm thankful for that. It is a lot to consider. Especially now, while rebuilding my strength after surgery. What we know for sure is that radiation must come first. Which means…we've gotta pump these boobs up! Quick!

I'm a Surwor!

Before the day of surgery, I was told by many to bring a snap/button shirt. You just can't wrangle into a regular shirt after a double mastectomy. (I guess you could if you had to, but why do that?!) They were all right! I brought one (the only one I owned) along with me and it worked fine. I also purchased three others from Goodwill so I'd have a few others to use while my arm mobility was limited.

Problem is: I'm not as much of a fan of snap/button-up shirts as others may be. For whatever reason, my shirts are 95% pullover shirts. Including short sleeved shirts.

Enter another survivor's blog. Thanks to Jo already having been through her surgery, she found a creative way to make it look like she was wearing a pullover shirt even though she wasn't! Jo is awesome and inspiring - in so many ways. She's also crafty and I'm SO glad I read the particular blog about re-engineering shirts right before surgery. Check it out below or on Jo's blog entry about "mastectomy style":

Step 1: Take any shirt you're willing to forever alter. Use scissors to cut the back side of it vertically - all the way from the bottom hem to the neckline.

Step 2: Using your choice of fasteners (buttons, velcro, safety pins), apply in several places along the back side - enough to keep the shirt on you. 

Mom and Sandy chose to use sticky velcro.
Worked like a charm (but does not survive washing, fyi).

We applied thee velcro down from the neck a bit
so it wouldn't be too tight around my neck.

Step 3: Have someone help you get on and fasten your shirt and you're nearly ready. Just don't forget a shirt or hoodie to go over the craft project. (Espeically if you have nonsense words on the back like mine.)

Enough velcro to make the shirt stay on.
But not too close to the bottom hem for comfort when sitting down.
Anything pulling on my drain grenades = not cool.
Who knew I'd be a BC Surwor?  :)

A Quick Weekend

We had a short visit from Rachel, a long-time friend of mine. Long ago, she used to babysit me and my brother. I lost touch with her after middle school until my first year of college. Long story short, we ended up being roommates while in college!

She managed to fit in a quick visit before her father's sinus surgery, which was so generous! Larry, I do hope you're mending well. We enjoyed seeing her, getting caught up on our lives, exchanging cooking tips, etc.

Rachel was a whirling dervish in our kitchen nearly the entire time she was in Colorado! Joshua stepped aside (not easy for him to do) and she took the helm of the grand alkaline cooking ship. The smells were good; the food was fresh; the shared food, talks, and laughter were priceless. Thank you, Rachel.

One pumpkin = not too many seeds,
but FOUR baking sheets worth of gourd meat!

Rachel is an experienced bread baker; however, she hadn't made a 100% whole wheat version before. Her batch made two loaves and it was scrumptious! With a bit of butter and blue agave...OMG. Both loaves are already gone; if only she had baked 10 more loaves. :) We hope to get the refined recipe from her soon. 

She is - and should be - proud of her bread batch!

Girls that play together stay together. We both looked fashionable in our hats and thought we'd practice our latest 1960's go-go dancer / ninja / Charlie's Angels moves for a photo or two.

Adjuvant Chemotherapy & The Clinical Trial

We met with Laura's oncologist (Dr. K) for her first post-op appointment. It was good to get more information on the clinical trial she is recommending. Laura has a meeting scheduled next week to talk with the clinical trial doctor and find out more specific about the treatment, but here is what we learned.

Dr. K is recommending that Laura participate in a nation-wide clinical trial studying the effects of a new combination of PARP inhibitors, which prevent DNA repair, along with a drug called Cisplatin (a.k.a. Platinum).  Statistics show that not having adjuvant chemotherapy, treatment of cancer post surgery, statistically have worse cure rates than patients who have adjuvant therapy.

There is a possibility that microscopic remnants of the cancer may still be in Laura's body since she did not have a complete response to her neo-adjuvant chemotherapy. In the adjuvant setting there is no way to know the effectiveness of a treatment except by looking at studies, which produce statistics and make an interpretation to generalize a cure rate from any therapies that have been administered. This is because there is nothing that can be measured any longer since the primary tumor has been removed. You are either cancer free or the cancer comes back. If it comes back it has generally metastasized (spread to another organ), which is not good at all, and treatment for metastatic cancer is a whole other ball of wax.

The clinical trial involves two control groups. One where patients receive platinum and the other is the newer combination of Platinum plus a PARP inhibitor. Platinum on its own has been shown to be clinically  effective on patients with triple negative breast cancer who did not have a response to traditional drugs used to combat the disease. Although PARP inhibitors have shown promise, the combined effects of the two drugs are not known, and we won't know until after the study is completed and results are published, possibly years from now, what the statistical significance will be.

The effects of Platinum would be much like the AC chemotherapy Laura had earlier this year, only stronger. Here are the primary effects and differences of Platinum as described by Dr. K compared to Adriamycin/Cytoxan, the drugs Laura previously received:

• Nausea
• Fatigue
• Kidney risk - a known issue which can be mitigated with proper IV hydration during administration
• Neuropathy - a tingling sensation felt in the limbs
• Ear ringing
• Loss of hair
• Vision problems
• Dietary constraints
• Bowel issues

Just your typical chemo effects...

We will find out more about the trial next week but we know the clinical trial doctors will set the stage for when Laura will do her radiation "time" and how the treatments will be delivered. Laura will still be under Dr. K's care throughout the clinical trial and beyond. The clinical trial doctors may be harder to reach and it is comforting to know that Dr. K is only a phone call away for any questions that come up.

Dr. K had an anecdotal story that was reassuring about the way she operates. There was a study some a years ago with Herceptin, which has now been shown to be a very effective drug for hormone positive cancer. There were 3 control groups for this study, two of which used Herceptin with a combination of some other drug and one group which did not receive Herceptin. A few years into this study it became clear that Herceptin was increasing the cure rate for hormone positive breast cancer. Dr K said she would never put any of her patients in the first study once these facts came to light, knowing that they would have a 1/3 chance of not getting a drug which shows evidence of helping her patients. I'm glad Dr. K thinks like this and we trust her experience and guidance.

Laura is tired from this long journey that will likely become a bit longer. Even after all of the immediate treatments to overcome her cancer and preventative measures taken by modern medicine Laura will continue to live with the shadow of triple negative cancer for the next decade wondering if she is cured or if the cancer will resurface. Laura remains strong and ready to take this next step and knows we are all behind her.

Last Two Drains: You're Out!

On November 7, it was time to visit the plastic surgeon's office again. This is pretty basic - so here's a [mostly] photo narrative of what happened.

FYI: Each breast area drain tube is an actual tube until  about 1-2" inside the body. Then it's a tube that's split lengthwise: one half goes around the top of my expander to the middle of my chest, the other half is cupping beneath the expander, then up towards the middle of my chest. Both of those are about 9-10" long. And yes, detailing this makes me feel tough. :)

1. Left breast area drain tube - out.

2. Left breast area drain tube - out.

3. Look at all that came out! (No questions about the scissors allowed, smartypants.)

4. Bye-bye, fanny pack!! Even Jill knows this is a great thing! Yee-haw! My waist is now unencumbered.

5. Here is what a tissue expander looks like. They are made of heavy, thick, textured plastic. Two were implanted under my skin during my surgery (the first step in reconstruction).

photo courtesy of:
http://organizeinstyle.typepad.com/biggirlpanties/2010/11/expanders.html

6. The tool held over my breast tissue is much like a stud finder...it magnetically finds an area on the expander. This area is a port (much like my chemo port) through which a needle is inserted and saline is added to gradually fill the expander.

Check out Jill's bling!
She wanted it in the picture. :)

7. Jill used the stud finder to find the correct place for the needle for the saline injections. "X" marked the spot!

8. Time to inject the saline. BIG syringe, small tube, and small needle for the injection. This was not painful for those of you that might grimace at the photo. For the most part, my breast tissue is numb/has a slight tingly feeling. That is normal and it may stay like that for the rest of my life. I felt pressure and a prick, but nothing to give me the heebie-jeebies. My first fill was 120cc on each side.

The first fill went well. That evening I definitely felt more pressure in my chest and was sore. So bumped up the pain killer pills that I'd been cutting in 1/2. So proud, though, of my growing "little lady lumps"...now at a whopping 270cc!

Globbies!

Some drainage and the globs.

There's a thing that happens while caring for drains: they need to be stripped regularly. (FYI: drain stripping = holding the tube with one hand and sliding your other hand down the tube to clear it out.) Even so, things can build up inside the tubes. And when that buildup gets stripped down to the grenades, it just kind of hangs around. I called them globs or globbies.

Weird little clumps, aren't they? These were stuck in my grenades for days...maybe even a week. Then one night, when Joshua was emptying the drains, one of the glob ends came out a bit. So Joshua pulled and pulled and pulled - and the whole thing came out! Same with the other side's grenade that same evening.

It ALL came out that night.

Not appetizing, but fascinating stuff to look at and wonder about. I was so happy to have those out of the grenades - now my grenades were globbie-free!

Looks tempting, doesn't it?
No, not really. It's just for the toilet.

A Treat for Halloween 2011

On Halloween (oh, the irony!), I went in for my first post-op with the plastic surgeon. Joshua, mom, and Sandy also came. It was a rough ride there; the nausea set in quickly and I focused on breathing deeply and getting fresh air. Ick - really dislike that feeling. We will be visiting the plastic surgeon's office weekly for at least 6-8 weeks for follow-ups and fills. On this particular day, I learned that I'd get both of my pain med intake tubes out and my lymph drain tube out. Yay!

The PA (Jill, a wonderful gal with an evilish laugh that I both love and fear) had me breath in and out slowly and deeply to help me focus on something other than the long tubes getting taken out of my body.

First up: the pain med intake tubes:

Not a biggie. They were small in diameter.
Pretty long, though (~9in, methinks).

Then the lymph drain tube came out. The other one you see here was left in to drain the right breast area:

Bigger tube = a bit more uncomfort when coming out.
The lymph tube pulled out was ~7-8in long.

Here's all the stuff that came off or out of me that first visit:

Caveat for the literals reading this: not the tweezers, scissors, or gauze!

There was much to rejoice about after this first pre-op: my healing post-surgery was on track, I had three less tubes in me, and we all dressed up a little for the holiday. Also, the nausea from the car ride up there had worn off. So we all decided to go celebrate!

At WaterCourse - a vegetarian restaurant.

The Drain Game

Ugh. Drains. They're not fun. Still, they aren't half as bad as some women would have you believe. They get in the way and are cumbersome when pulling pants on/off and when bathing (waist-down only allowed at this point).

Technically, I had three drains. One for my left breast area, one for my right breast area, and one for my right lymph area. I also had two intake tubes for a local anesthetic - one to the right and one to the left breast area. Here's what it all looked like:

Yes, that is a fanny pack.
Yes, I'm exposing parts of my body I'd like to keep hidden,
but this is for informational purposes, so what the heck.

I am not a fan of fanny packs in any way (even though my friend Chana claims they're handy) - except for this surgery! We hung the three drain grenades from the fanny pack with safety pins, which made getting up/down and moving around much easier. Another trick: you can also stick grenades into the inner pockets of jackets if you want to conceal them well when going out.

The picture below shows one of the drains at the insertion site - below and slightly "behind" the breast area. The drain is kept in place by a few sutures, the round sticky pad you see in the picture, and clear tape around the whole area. The point is to NOT have the drain move AT ALL. I'm fortunate: mine behaved well. 

If you're thinking drains are nice and automagic - think again! While they do work via suction to get all the blood, healing juices, flesh bits (yes - more on that later), and other goo out, they do need help. Joshua and mom did a great job stripping the drains. I preferred to sit back and enjoy the view while they did the work.

Several times a day, the grenades needed to be emptied and contents measured accurately. Once each drain produced </= 30cc of fluid a day, it was given a green light to come on out.

The grenade fluid lineup. Sexy, ain't it?

The Mystery Snowblower

Me snowblowing last year.
Won't be doing any of that this year!

The other day, Joshua left for an early appointment. It was snowing when he left. Mom soon came over to help me bathe and get dressed - it was still snowing then. Getting me "ready" in the morning is quite a lengthy process so we close the bathroom door and turn on the space heater to help us be more comfortable.

Thanks to an unidentified neighbor, when mom and I left for an appointment a while later, the ENTIRE driveway, sidewalks, and patio had been cleared! We're talking at least 6-8" of snow removal! I'm still not sure who did it, but thank you so much for the help.

Step Into the Time Machine

Can't seem to help myself. I've been itching to say hello on the blog again. Hi all! I'm recovering well (as far as I'm aware) from surgery and am headed into week 2 post-surgery soon. Feels good to have THAT behind me. For now, I'm going to rely on pictures to get ideas and experiences across. If I say something that doesn't make sense or omit information that you're curious about, please ask.

*A slight hint that some might find these and future pictures to be gross. But hey, I'm not showing you the grossest stuff - just the reality of what I'm going through. I'm finding a lot of this medical stuff interesting and want to share my experience and knowledge with others.

Joshua came to my bedside first - boy, was I glad to see him!

The two nights at the hospital were...challenging. General anesthesia is difficult for me to recover from. And while morphine helped with the pain I was feeling immediately after surgery, it presented more problems than help: I couldn't keep any food or liquid down. And though I tried with all my might on day 2 in the hospital to use the commode next to my bed, it just wasn't going to happen. (And that little bit of movement away from bed got me sick again, too.) So that evening, after an ultrasound confirmed how full my bladder was, I had the wonderful experience of being catheterized for the first time. Not bad, really. And a relief to know that something was headed in the right direction - out!

At the end of day 2 at the hospital, I went on a little walk down the hallway. My legs were shaky and I didn't quite like the feeling of moving, but it was mandatory to do that before being discharged, so I wanted to make that happen. Joshua, dad, and Miyako were there to see that happen. The picture below shows what I had to walk around with - lots of attachments. These were in/on me when I woke up from surgery and they came home with me, too.

I had three drain "grenades" and a big On-Q local pain med ball.
The nurses emptied the grenades every few hours, as they filled up quickly!

On day 3, I was discharged since I could walk, go to the bathroom, and keep food down. Happy day! I was wheeled out to the car and got to behold awesome sights all the way home since it had snowed ~6in the day before. Our power was out and wasn't going to be back on for another day or more so we stayed at mom's house for a night.

One of the daily tasks I am privileged to do is breathe slowly and deeply in and out of this "Airlife" thing to get my lung capacity back to normal.

My lung capacity has increased since I first did this in the hospital.
Small steps, but it's a positive!

Pathology Report

Here is the information we received post surgery in the pathology report.

• the main tumor and its sattelite friends/offshoots in the breast tissue were removed with clear margins


16 level one lymph nodes were taken from the right side
• active cancer cells were found in the breast tissue and one lymph node
  
• Laura's chemotherapy regimen reduced >90% of the large tumor mass

Keeping things light.
(t-shirt from http://freakyts.com)

We were hoping for what is called a "complete response". This is where all the cancer cells would have been shown to be inactive. An incomplete response is less desirable based on cure rate statistics.

We are beginning to look into clinical trials based on recommendations from Laura's oncologist. This will likely involve another round of chemo. We anticipate meeting with a representative from a clinical trial here to find out more information and to weigh the risks and benefits.

Radiation is still on the horizon.

Presently, Laura is focused on rest and healing - doctor's orders! Her spirits are positive and the recovery from surgery is on track and going well. She has a good appetite and has progressed to taking short trips out of the house when her energy is up, although she is completely exhausted afterwards.

More on what we learn about future treatment plans soon.