Young Empowered Survivors! (YES!)

December YES! group attendees.

There's a support group I'd like to tell you about: Young Empowered Survivors! (YES!). I found this group in the Colorado Breast Cancer Resources Directory. If you're looking for a lively support group, I found one!

The members of YES! have generally been diagnosed with cancer before the age of 45, but we don’t put constraints on the word ‘young’. If you feel that you can benefit from our support group,  we welcome you.

I'll admit I was reluctant to go to my first meeting. Two things helped overcome that fear: meeting and talking with one of the YES! group members (Elana) before going to a group event and taking reinforcements (Joshua and my mom) with me to my first meeting. The first meeting I attended was in late July, just 1 day after one of my treatments. I was hopped up on steroids and starting to feel the effects of chemo and not having slept for two nights in a row. Still, Joshua and mom encouraged me to go and helped prepare a food dish to bring.

The first meeting was so enlightening and encouraging. At first, I thought I was in the wrong house: these women looked...normal! Some had long hair. Some wore v-neck shirts and looked like normal-breasted women. All had been diagnosed with breast cancer. The conversation flowed easily between members of the group and a health and wellness coach was there to speak about being an advocate for individuals with cancer. I found the meeting informative, positive, hopeful, and helpful. Although I was wearing out as the evening went on, I didn't want to leave as planned. I wanted to stay and soak up every bit I could! It was so encouraging to see other women - some with my same type of breast cancer - SURVIVING.

A lasting memory of that night was when Elana (the member I met before this event) shouted "Who wants to see some boobies?!!" --Was this for real? Were they asking us - the two "new" gals, Erin and I? Would some boobies really be seen? Four brave BC warrior women took us two newbies with them into a bathroom and proceeded to take turns showing us their reconstructed boobies. It was a fabulous experience to see the possibilities. It's what I wondered about from the beginning and I was able to view with my own eyes, in person! It wasn't some scary internet photo that may or may not have been doctored. This was real. <sigh> I am still so thankful for those four baring it all to the two newbies that day.

A 2011 holiday group photo.

I've been to four other YES! group functions since and enjoy the quality of conversation, the information we discuss, and the guest speakers/events offered. I'm thankful that many of the other women in this group have a "piss and vinegar" ratio similar to my own. And I find it both heartbreaking and heartwarming when a new member shows up for her first meeting. Talk about a club you don't necessarily want to join (because you've got to have cancer to join, silly!) - but are so glad it exists for just that reason.

There is something about relating with other women that have been through similar journeys themselves. Not many can truly empathize with what you're going through, but these women have the experiences and knowledge to do so.

Yea for Higher WBC Count!

Third treatment: Done! On Monday we arrived at the University of Colorado hospital early in order to draw the precious blood that would determine whether Laura would be eligible for her third treatment. We knew that she had been feeling really good - but then, that isn't necessarily a crucial indicator for white blood cell (WBC) count. We met with Laura's doctor while awaiting the determinative news, and he was impressed with Laura's strength thus far (so say we all!). Later, at the infusion center, Laura rejoiced at the news that her blood counts were well within range for treatment. In fact, her WBC count had more than doubled since her last treatment; it was nearly up to her beginning counts! All other blood indicators looked good too. PTL!

And so Laura "welcomed" the third round of Cisplatin. She was very tired at the end of the day, but perked up in the evening and enjoyed a special visit from her dad, who came in to be with her a couple of days. Yesterday was a low-key day for Laura but she surprised us all by taking a nice slow walk outdoors with her dad that ended up being two miles. Wow!

Although Laura is experiencing "stomach rumbling" sensations, thankfully the anti-nausea medications are doing their job and her appetite remains in tact -- small meals, small amounts. We're hoping for another walk outside to enjoy the stunningly beautiful Colorado day!

Come Away with Me...

...to a clinical trial infusion! The title sure read nicely, didn't it?  :)

For the today's cisplatin infusion (#3 of 4), I thought I'd take you all with me so you can see what these infusion days are like for me.

1. First up: I check in at the Breast Center at CU Hospital. 

2. We wait. You knew that, though, right? The Breast Center appointment consists of:

• my port being accessed (yep, I still have it) for bloodwork to check a litany of things - some of which determine if I'm able to receive another infusion that day
• taking weight and height measurements
• discussing side effects, any issues with treatment, questions I have, etc.

3. After we're done at the Breast Center, we turn back and head towards the Anschutz Cancer Pavillion (ACP). Sounds like a circus to me; however, it's not quite as entertaining. 

4. We've found a pleasurable way to get to the ACP. No crowds and nice piano music to listen to from the floor below. I'm trying to be your personal tour guide below. Oh yeah, and my trusty roller bag with necessary supplies (entertainment, hydration, blanket, good luck items, healthy snacks, medications, etc.). 

5. Ooh, look! It's the Infusion Center Check-in! Don't you just love signs that look all formal and fancy? Trust me, it's not all it's cracked up to be. 

6. Unfortunately, I don't have a picture that accurately gets the feel of the waiting room. Suffice it to say it's a weird green tint (no, I'm not making this up) and there's a slight hint of smoke smell in the air. Maybe it used to be a break room back in the day? Anyway, it could use a little paint, methinks. 

7. Aah, the hallway de infusion stations. Great that CU has the ability to treat us cancer folks, but unfortunate that they need so many stations. I shake my head every time we head down to my station for the day. There are >20 infusion chairs now. Construction is now underway to add a good deal more.

8. Lucky #19 is where it's at!

9. The infusion stations are copacetic. There's enough space to get by and move about. Not much privacy or noise abatement, though.

10. Getting infused. (And looking entirely too excited about it, I realize.)

11. Much of my infusion time is spent using my tablet and keyboard; two wonderful gifts Joshua gave me last year. Additional hydration is always good, too. Drinking up forces me to take bathroom breaks = walk.

12. My view of the outside world as I'm sitting in my infusion chair.

13. A courtyard just outside the infusion center. While I'm getting pre-meds, I can go outside and stroll around with my IV cart. (Not allowed while the chemo drug itself is being administered.) So far it hasn't been warm enough to go out - but maybe today will be a good day for wandering around outside a while.

There you have it - a visual tour of one of my infusion days at UCH. 

And let the countdown begin...in 20 days, I'll be 75% done with the clinical trial!

Spring has Sprung!

Spring is here!

This week I've felt strong and healthy. It's great to bounce back dramatically within just a few weeks. The difference between weeks 1, 2, and 3 is remarkable. Feeling and noticing all of the differences through the weeks helps give me the mental boost to know I'll recover again after treatments #3 and #4. Sometimes, during that first week post-treatment, doubtful thoughts do creep in occasionally.

I've been trying to catch up on communications with people this week. The list is long and deep and I am doing my best to stay afloat in the sea of communication...but admit I'm getting a little waterlogged.

The rec center pool this morning.

Speaking of water... The clinical trial doc officially ok'd me attending a water aerobics class during part of my chemo cycle (when my counts are higher), which has been so much fun. I went twice this week! Aah...the smell of chlorine...the good workout...the nearly insatiable hunger afterwards... I'm not able to swim laps yet, but I'll get there eventually.

What a great week - the first official day of spring was this week and I'm seeing nature's promise of new beginnings and growth everywhere. It cheers me up to see buds on trees, flowers blooming, and no snow on the ground! (Oh yeah, and did I mention the hair growing on my head, too? Amazing.) Look at what a difference a week makes:

This orchid just began to flower last weekend. 

This pic was taken mid-week.

Look at it bloom! This is what it looks like today.

Something else that was fun this week: craft time! Mom and I went to Hobby Lobby and loaded up on supplies to make spring wreaths for our front doors. This was a project you could get the supplies for and successfully finish in a day. They're cute and I'm sure we'll be making more!

Crafty supplies.

My simplistic wreath.

Mom's wreath.

This weekend the weather should be spectacular! 75-80 degrees and total sunshine - bring it on. Saturday I have a date with a couple of gal pals which should be fun. Looking forward to that! For Sunday, I have a mystery date - well, at least I know who it's with. Joshua invited me out for an all-day date. I don't know much more other than it'll include some light hiking and walking; the rest is a mystery. How fun to have a couple of events to look forward to this weekend right before the next infusion!

movie premiere: Hungry for Change

I've been eagerly awaiting to see a documentary: Hungry for Change. 

From the movie web site:

Hungry for Change exposes shocking secrets the diet, weightloss and food industry don't want you to know about; deceptive strategies designed to keep you coming back for more. Find out what's keeping you from having the body and health you deserve and how to escape the diet trap forever.

Featuring interviews with best selling health authors and leading medical experts plus real life transformational stories with those who know what it’s like to be sick and overweight. Learn from those who have been there before and continue your health journey today.

We haven't watched this documentary yet, but plan on viewing it and writing up a review of it here on the Ta-ta Times sometime next week. We wanted to share the link below with you - so you, too, can watch Hungry for Change: Your health is in your hands. The film is available FREE online for 10 days only (March 21-March 31, 2012). Use the link below to watch the entire film online:

www.HungryForChange.tv/online-premiere

Radiation Images

I've wanted to share these for some time, but keep forgetting to do so. The following are a small offering of radiation images I was able to get from the radiation dosimetrist. Pretty interesting stuff if you ask me!

*Click on the pictures to enlarge.

This picture shows a 3D rendering of my lungs and heart. You can kind-of see my unique looking armpit - more hollow since those lymph nodes were taken.

This is like a deli slice through my entire body at chest height. This was taken during one of my planning sessions for radiation. It's when the right side was expanded much further than the left side. The "shine" or "glare" you see in this picture is the xray hitting the expander magnet. The colored lines represent where various levels of radiation will penetrate in my body.

A set of four images; each taken from a different angle. There's a fat green guy in the bottom left of each picture showing my body orientation. Again, various line colors represent different levels of radiation; they wanted to focus sometimes on my chest skin and other times deeper (to the chest wall). In the top right image, you can see colored lines around my lungs and spine; this was used to help block out as much of these vital pieces of me as possible from the radiation. The yellow rectangle in the same image is where radiation was focused on my neck lymph nodes.

Four more images of me taken at varying angles. Colored lines show planes of radiation and radiation amounts at various penetrating depths. The top right image shows a bit more of the expander magnet/port area. 

Bouncing Back

Wanted to get in a quick blog post today. I'm feeling better and much more "normal" now. Last week's treatment definitely put a curb on my enthusiasm and energy level for a solid week. All weekend I was pretty pooped, but did rally to go on an outdoor walk with Joshua, which felt great. The fatigue hits pretty hard and long with cisplatin and the ear ringing switches into obnoxious gear at the turn of the weekend, it seems. I'm now convinced that constant ear ringing could drive a person mad. I have my moments on those days!

All in all, I'm pleased with the side effects I'm experiencing. It's NOT extreme nausea and vomiting; for that I remain so thankful. That's the worst feeling in the world to me - nausea. So avoiding that, even with other symptoms that are challenging, is okay by me. There's always go to be something, right? ;)

I'm about to start slipping towards another WBC low point (nadir). The onset of this happens ~10 days after treatment and lasts from days 14-23. I only have 21 days in my cycle between treatments, so my counts will remain low. Please keep my treatment schedule in your thoughts/prayers; I'd like to be able to make the next treatments happen as planned so I can knock out the remaining 7.5 weeks of this trial and move on to greener pastures.

Feeling more like myself really helps me mentally. So does the sunshine and 70+ degree temperatures we're experiencing this week. It's fantastic! Living day by day. Doing what I can. Feeling the love.

Life is good.

The SCAR Project: Breast Cancer Is Not A Pink Ribbon

From the SCAR Project web site:

"The "Baring It All" documentary by New York-based fashion photographer, David Jay highlights the lives of four subjects taking their pictures for his SCAR Project. The goals of the project are to raise awareness to early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens."

The visual pictures were gripping, but even more so were the human stories of what it meant for each participant to become involved with the project and hear about how their struggles with this disease has changed their lives.

This film brought back heart wrenching memories of what we have gone through and still face in our future. It is a deeply touching look at the reality of young women surviving and living with breast cancer. I encourage anyone to watch it. Chances are you know someone who has been affected by breast cancer and this will give you an insight into what they may be going through.

Going with the Flow - Round 2

Hi all, in contrast to the unpredictable crazy weather the two days following Laura's second Cisplatin treatment (72 on Tuesday and 32 today), she is consistent in her ability to handle her recent challenges. For the first night, Laura tried a different medication (Ativan 1/2 pill) that she had not previously used, hoping that she might be able to sleep past 4:00 a.m., and sure enough, it worked. Laura has been able to sleep through the last two nights and although the chemo is producing its usual fatigue, she is pleased about her restful nights. And the best news of all: no bad nausea! In fact, Laura was able to enjoy some pretty good food last night- in particular, the whole wheat crust pizza that Joshua made for dinner. Laura even rallied later in the afternoon for a 40 minute slow walk on the treadmill - awesome. We are hoping that the rest of this week follows in the same manner!

With this good report comes some concerns. As Laura indicated in her last post, her white blood cell count was down. The normal range is 4.5 to 10. With the 1.6 white blood cell count at her second treatment, we are concerned about neutropenia and infection, so we will have to be ultra careful about cleanliness- not only with respect to hygiene but also in food preparation. And Laura won't be venturing out and about as much now. We're hoping that her white blood cell count doesn't drop below 1, preventing a scheduled treatment.

In short, things are "going well" and Laura continues to do what she needs to do - and with the same steadfastness she has displayed thus far. Go Laura !! As stated in one of Muhammad Ali's uplifting quotes:

“Don’t count the days, make the days count.”

We support you!

Trial Infusion #2

#2-yay!?

It 's been a nice couple of weeks. Time to change gears and sit in the infusion chair again - chair #19 to be more specific.

We made it to the hospital this morning in good time. How is it that the nicest day we've had in a while is the same one I'll be spending most of the day sitting indoors? It's not fair, but hey - life isn't fair. If I'm up for it, I'm going to go on a walk in the neighborhood after we're done here. It's sunny and 60+ out there, people!

Overall, I've done well during the clinical trial so far. I trust blog readers know kind of how this first round went, so I won't reiterate. Today my bloodwork revealed that my WBC count is indeed low. The threshold for receiving treatment is a WBC count of 1.5 or above; I'm currently sitting at 1.6. So, by the hairs on my chinny-chin-chin, I'm getting my infusion as scheduled today. I'm low, but not low enough to call for a Neulasta shot (yet). I must be even more vigilant about washing my hands after handling pretty much anything, not being around big crowds, and not exposing myself to sick individuals.

Nobody's saying anything firm, but I'm gathering that for Infusions #3 and 4, if I'm between 1.0-1.5, they may give me a Neulasta shot and still go through with a treatment. If I'm 1.0 or below, my treatment may be delayed. But that's in the future, and there's much for my body to "do" between now and then.

In hair news:
My eyebrows are starting to vacate. :( It's not easy to see them go, dangit. I loved having eyebrows and eyelashes! At least I know they came back once, so they'll be back again. I seem to be losing eyebrows and eyelashes daily. My leg and armpit hair is definitely not as dense as before all of this began last summer but also since my 1st treatment of cisplatin. My head hair and...um..."other" hair is still hanging on! That's amazing since those two are the ones I lost first last time 'round. I anticipate losing more hair in the coming weeks, but wouldn't it be GRAND if I didn't? :) It's nice to think of it that way, but I'm also realistic and know not many people skip the "losing hair" part of receiving cisplatin treatments.

Here's to hoping this round is as kind as the last one.