Cancer...The Gift That Keeps on Giving.

My right hand has lymphedema. You can see the swelling. 

Me, wearing the pump. aka the Brown Beast

 So you may be wondering about the brown torture-looking device I have on. Well, this is one of the treatments for the newest gift of breast cancer---lymphedema. When you have surgery for breast cancer, either lumpectomy or mastectomy, the removal of lymph nodes for testing is a given. However, once you have lymph nodes removed you are forever at risk for developing lymphedema. It is a chronic condition that does not go away, it is only managed. The big bummer is that no one can predict if they will get lymphedema. Some women have 30+ nodes removed and never get it and super lucky ones who only have 2-3 nodes removed do get it. Woohoo! I'm the lucky one again! You may be wondering, what exactly is lymphedema? At the end of the post I shared some links and a video for your viewing pleasure.

After the removal of the nodes, you are told to protect your affected arm at all costs. NO blood pressure. NO flu shot. NO blood draws. NO insect bites. NO sunburn. NO extreme temperature changes. NO trauma. You get the picture. By the way, if you Google images of lymphedema, be prepared. It is not a pretty site if you let it go too far. Hence, my tenacity at finding an answer to my pain.

Little did I know that carrying a DRA kit out of a campus door would lead to this frustrating condition. I scraped my hand along a door of the building and gave myself a deep bruise. That bruise was just below my index and middle fingers on my right hand. Guess which two fingers swell the most? At the time, I had no idea that one bruise would lead to all this. This was right before Christmas and I couldn't figure out why I was hurting so bad. I had no explanation and never suspected lymphedema. I didn't think that lymphedema hurt.

My unexplained traveled from my hand, up my arm, and into my armpit area. My oncologist ruled out a blood clot. But still not having an answer for the pain, I saw yet another doctor. This one said it was tendonitis and gave me a shot in the wrist. (Remeber, I'm not supposed to have shots in this arm...) He also put me in a brace which I wore for about a month with no relief. Finally, after seeing my oncologist again, he referred me to physical therapy for lymphedema. Maybe this was the answer! Frankly, I needed an answer. I was beyond frustrated at not having an answer for my pain.

I met with an OT and PT who both specialize in lymphedema.  These ladies have helped so much and I DO have an answer to my pain. They have helped me learn and educate myself about my lymphatic system and helped me get the Brown Beast, a lymphatic therapy pump which mimics the manual drainage massage of the therapist. The next step is to get the swelling down in my hand so we can have a custom garment made for my hand and arm. I am thinking I may need one that looks like a robot arm. ;) It is a work in progress and a condition I will have to deal with forever. That is the crappy part. So just when you think you are done with cancer...BAM! another fun surprise from the gift that keeps on giving.

Here are some links if you want to know more about lymphedema.

BreastCancer.org
http://lymphedematreatmentact.org/

Warmly,

Laura

Paying it Forward

Triple Negative Breast Cancer Awareness Day is March 3.

March 2nd marks the one year anniversary of my double mastectomy. Little did I know that it would be a series of 4 surgeries and multiple visits to the plastic surgeon before I could get some semblance of natural looking breasts back. (But still no nipples :))

TNBC accounts for 30% of all breast cancers and is the rarer and more aggressive type. It is also more likely to reoccur. Often it is harder to detect metastasis since no blood work can show a possible recurrence.

Please consider donating to my page for TNBC Awareness. 100% of my fundraising goes to TNBC research.

Here is the link to my page.

Blessings,

Laura

365 Days Later

I have crafted this blog post many times in my head over the past few weeks. Yet, I had a tough time actually writing the words down. It is almost impossible to reflect or even describe the past year of my life. It was at the same time the fastest and slowest.

One year.
One year since my world was sent into a tailspin.
One year of fighting a fight I was never prepared for.
One year consisting of 10 rounds of poisoning chemo, 4 surgeries, a multitude of new scars and several short and long term side effects.

Oct. 8, 2015. A year ago Scott and I were brought into a special room by a nurse navigator and told those dreaded words, "I'm sorry to say, you have cancer." Those three little words, "You have cancer." are the most life-altering words, not only for me, but for my family and friends. All this happened in my favorite month of the year--October, or shall we say, Pinktober? Breast Cancer Awareness Month took on a whole new meaning for me. I was surrounded by pink ribbons everywhere I looked. It was a harsh daily reminder of my new normal.

If you have a close friend or family member who has battled cancer, then you have seen the true face of this ugly disease. It is not a pretty pink ribbon, pink socks, or even a walk. It is ugly and most of us hide this part of cancer from colleagues and friends. Instead, we put on our positive pants, smiles, and plow ahead for those around us. But cancer doesn't play fair.

Cancer robs you.
It robs you of your
health
hair
well-being
confidence
comfort
taste buds
intimacy
energy
mental capacity
strength
sensation
and finally--your breasts, one of the ways we define womanhood.

However, it does gift you with things too.
mouth sores
nausea
fatigue
bruises
discolored nails
neuropathy
chemo brain
weight gain
swelling
lymphedema
and scars (more than I care to count)

No, breast cancer is not a pretty pink ribbon, it's ugly and devastating.
It has not been an easy year. I never want to repeat it. Technically, I am cancer-free but really, I'm not. I will never be free of this disease. There is not a day that goes by that I don't wonder if I'll hear those words again--since statistics reveal there is a recurrence rate of 34% with Triple Negative Breast cancer. But this year is over. I can move forward, I am brave. Strong I stand.

One year.
365 days that changed who I am forever.

Laura

The Sisterhood

It's a sisterhood I didn't apply for, but I'm proud to be a member. As soon as you hear the words, " You have breast cancer." You automatically file your application. Each member chooses how involved they want to be in "the club," whether just checking in every so often. Then there are those who become the pledge trainers, taking in the newbies and making sure everyone has information. No matter how committed, the sisterhood is part of your life. I am blessed to be a member of this group of fighters.

When you have cancer, no one truly knows what you're going through or how you're feeling except those who have gone before you. Some lead the way with positivity and others with a sadness that can be overwhelming. Everyone handles the diagnosis differently and no one way is the right way. 

One time when I went to visit the Silos in Waco, I was checking out. I was still in chemo and had no hair, only a hat on. The checker asked me if I was in treatment and when I said, "yes" she reached across the counter and hugged me, saying, "I'm a survivor too. Welcome to the sisterhood." I started crying. There is some magical bond that occurs over this devastating disease. 

Recently, while in LA for my TNBC study blood draw, I made arrangements to meet up with a new "sister" from a breast cancer Facebook group. We met for lunch and visited like we were old friends. In fact, we plan to meet up again on my next trip down. What a blessing to have these new friends all over the country and world. I hear over and over that breast cancer has blessed people's lives. I didn't understand that at the beginning of my diagnosis but I do now. I've learned so much about myself, my friends and my family facing this fight. Experiences I hope to never repeat made me stronger because I had them. So if you at some point have to join the sisterhood, know that it is an honor to fight beside some of the fiercest, strongest women, to learn from those who went before you and to help those joined after.

Blessings to all,
Laura

The "Girls" are Gone Part 1

Disclaimer: I am on some good pain meds so please disregard my grammar or spelling or even any bizarre comments.

Well, I am a few days out from surgery and I think I am healing pretty good.

On Wednesday morning, March 2, we headed to the hospital to be there by 5:30am. My friend Tracy's mom works at the hospital and arranged for me to be a VIP patient for my stay. They brought me hats and a prayer shawl while I waited to be called back. If you haven't heard of a prayer shawl, it is a shawl either crocheted or knitted where each stitch is prayed over.

We were called back to a tiny pre-op room where about 5 family members crowded around my bed, hugged, kissed and prayed for me. My doctor wanted me to be warm so they brought in a "blow up" blanket that resembled a swimming raft. The anesthesiologist gave me some meds to take the edge off which pretty much knocked me out and I have no recollection of anything after that.

Apparently the surgery went well. My family said that it was a little over 4 hours. Dr. A removed my sentinel node to test for cancer and none was detected. We are now waiting for pathoology from the tissue and other nodes that were removed. Wednesday was pretty much a blur. I react to meds by pretty much sleeping all the time. For example, I was eating dinner and I fell asleep with my fork in my hand with a food on it. I'm like a narcoleptic.  So if you saw me or talked to me on Wednesday, I probably don't remember it. I know I Facetimed with my kids so they could see my face. I don't remember what we talked about though.

Walking around was encouraged every 2-3 hours and I was slow. I slept well through the night except for the interruptions by the nurses doing vitals. I must throw in that I had wonderful service at Baylor Plano. The nurses, techs, food workers, everyone was so kind and friendly.

By the end of Wednesday, I still hadn't seen the incisions. I was very bandaged up and all I could tell was that I was flat as a pancake.

I'm starting to get a little sleepy now, so I'll pause and pick up in part 2. Thank you for all your many prayers, love, notes, Facebook posts, and hugs as I went through this next difficult step. I pray that everyone could feel as loved as I do.

Laura

The New Plan--No More Chemo!

I am usually a very flexible person. Change really doesn't faze me too badly. If my original plan deviates, I can normally go with the flow. However, my health plan is the exception.

When my oncologist says that I need 16 treatments, then I NEED 16 treatments. So when I went to have my normal Monday chemo treatment, I was thrown off when he said that we needed to hold off because of my neuropathy. My fingertips and nails were so painful I couldn't button my own shirt. Apparently the neuropathy can become permanent and as a writing teacher, hurting to hold a pencil was a problem. Dr. M wanted to consult his colleagues to decide how to proceed. (I LOVE my oncologist! He always calls me back himself and always listens to me.) Anyway, he called me on Tuesday to say that we were going to stop chemo and proceed to surgery. In that moment when I should have been elated to stop streaming poison into my body, all I could think of was, "this isn't part of the plan." What happens if we don't finish? Will the cancer come back? Will I need chemo again after surgery? I really didn't know what to think or how I felt.

That same night a new breast cancer sister took me to my first support group. These ladies helped me process through my thoughts and feelings. I definitely felt much better afterwards. I'm still a little on the fence about my feelings, but after seeing the plastic surgeon yesterday, I am getting excited. If we do the surgery earlier than I expected, it may fall around spring break which allows me to take off less days (that I don't have) so I don't get docked. It could be a really good thing. I'll have more time to heal before summer as well.

So for right now, it looks as if I will be having surgery any time after Feb. 24th. I don't have a date yet, but I'll keep everyone posted.

Much Love,
Laura

Ignorance is Bliss...Until it Isn't

Is this not the most beautiful wreath ever? Dori O'Neal made it for me. She took care of my cousin's twins as if they were her own since they were born and has been a part of their "framily" (My word for those friends so close that they may as well be related.) I love it, thank you for blessing me, Dori.

So I've heard that ignorance is bliss. Sometimes it is, but often it is a coping skill for denial.

When I was first diagnosed in October, all I could do was focus on the task at hand...and that was chemo. What would it be like? When will my hair fall out? Will I be able to work? What should I expect? How will my family and friends handle this? My world was full of questions and I could only really focus on that aspect of my cancer.

Sure I knew I was triple negative and that I didn't have any markers for hormone receptors. (That means that my cancer is not fed by hormones.) I bet you didn't know that there were multiple types of breast cancer? Neither did I until you're in it, or know someone who is. All this time, I've convinced myself that triple negative is the "easier" of the two. I won't have continued chemo pills, no port, no Herceptin for 5 years. When I'm done with all the chemo and surgeries, I'm done, or so I thought...

I finally started researching triple negative breast cancer. Here are some facts and tidbits. I know my cancer responds to chemo best because of its grade, but is also the kind more likely to reoccur in other parts of the body. After talking with my oncologist today and asking about how we go about screening for cancer over the next 5 years, the answer was vague. There are no tried and true ways to scan other than mammograms. The problem is that TNBC often shows up in other parts of the body, like the liver, bones, etc. I am worried that I will be hyper sensitive to every little ache and pain. Who knows? Maybe ignorance was bliss.