I’m Still Standing

Greetings from the other side of cancer treatment! Life seems to be very much back to normal, and the past 8 months have been both long and short. High and low. But, I’m still cancer free!

Since my last post, I’ve had 31 radiation treatments, one CT scan (clean!), one major surgery (latissimus dorsi flap reconstruction surgery in December), 3 expansions to my tissue expanders (ouch), countless doctor appointments and many valuable physical therapy sessions. And, I still have one impending surgery, but from what I hear, this one is a breeze compared to the others.

Many people seem confused about the reconstruction process. I was too until I had no choice but to understand it (which if I am honest wasn’t really clear until I was marked two days before my surgery). Different people can have different types of reconstruction and varying degrees based on the type of mastectomy, their size, whether or not they have radiation and more. If you care to know more, keep reading. If not, skip down a few.

Because I had radiation, I couldn’t just go straight to implants for reconstruction. For starters, there was not enough skin present, even though my mastectomy was considered skin-sparing. This is why it was recommended that I go with the latissimus dorsi flap surgery which basically takes the skin, tissue and muscle from your back (area just below your shoulder blades) and re-routes the muscle to your chest to rebuild the breast. The skin flaps are, for lack of better description, cut and pasted to the front to create the needed skin. Tissue expanders (think of a deflated balloon with a port entry for fluid fills to expand it) are inserted and filled initially with a small amount of fluid. Then every two weeks, I go in for “expansions” where fluid is added to further stretch the skin. I am at the end of that phase now, thank goodness.

This coming Monday, I meet with my plastic surgeon and most likely will schedule my exchange surgery. This is where they remove the tissue expanders and replace them with the permanent implants. It should be sometime in early April. Not too much recovery time. And then….I’ll be done!

The recovery from this whole reconstruction process has not been easy by any stretch, but as always, I’ve had lots of help and support and prayers. And I do feel like I am on the other side. The light at the end of the tunnel is getting closer and brighter. And I’m still standing, albeit sore, with slightly less range of motion and some massive scars.

Cue Elton John. “I’m still standing…better than I’ve ever been…looking like a true survivor…”

So life today is more about spending weekends in our cabin in the mountains, crazy family FitBit challenges which I lose daily–even to my 70-year-old dad who by the way is rocking his daily steps–(and I won’t have my post-surgical crutch excuse much longer), lots and lots and lots of work, impending hip replacement surgery for Millie, our 7-year old English Cream Golden Retriever (because we didn’t have enough medical bills in the past 18 months) and just trying in general to get back to normal life that is not driven by disease management.

I’m most looking forward to my post-cancer trip to Europe this June and using my paid time off days this year for fun things instead of un-fun things.

Another thing that has me looking up is the progress being made in research for Triple Negative Breast Cancer. Last year, my family, friends and the awesome Rhythm Dance Center family helped raise $55,000 (gasp!) for the cause at Bullseye Bash!! In recent months, triple negative breast cancer has gotten more attention, new clinical trials on a possible vaccine, and more ongoing genetic studies. In a discussion with my oncologist a few weeks ago, she told me they are very close on being able to classify triple negative into what they think are 6 different subtypes. The more they learn this aggressive disease, the more likely they can develop targeted therapies. This is huge. This is not information that existed last year. This is PROGRESS!

That’s why I support the Triple Negative Breast Cancer Foundation and am serving as a Champion for them. It’s also why I am asking once again this year for your support in raising money to fund MORE RESEARCH for the most aggressive form of breast cancer.

TNBC day is 3.03.15. So in keeping with the family FitBit challenges, I am committing to walking 3.03 miles on 3.03 to raise awareness, with my FitBit step counter hawks watching my every move to make sure I do it.

I’m asking others to do the same, and if you are willing and/or able, make a tax deductible donation to the Triple Negative Breast Cancer Foundation. 100% of your donation will go toward research for targeted therapy and a cure! Even if you can’t donate, I challenge you to do 3.03 of SOMETHING on 3.03 and post your activity on your social media page(s) … a la Ice Bucket Challenges, sans the cold water and the obligatory nominations. You don’t have to walk…you can hike, bike, run, ski, sled, swim 3.03 miles, laps, hills, minutes. Be creative but spread the word. Tell one person about TNBC on 3.03 who doesn’t know about it.

When you post in social media, tag me and/or the Triple Negative Breast Cancer Foundation page and/or this link:
http://tnbcday2015.kintera.org/shelleymarshall

That’s also how you donate too (via that link).

My goal is to raise $15,000 for this amazing Foundation that gives me and my fellow TNBC survivors and current fighters HOPE in this scary disease.

Thank you for your support, no matter how you provide it!

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Recovery, Physical Therapy, NED, Decisions and Next Steps

It’s been over a month since my last post. If you are a regular reader of my blog, you know I’m usually compelled to provide a ridiculous amount of detail to make up for what could have been five or six different posts. My goal tonight is to simplify and keep it as brief as possible. We’ll see if I succeed. Yeah, I have my doubts too. OK, let’s be honest…not going to happen.

Recovery

So, I survived my double mastectomy surgery. The anxiety and fear leading up to the surgery was so much worse than the actual surgery. I woke up in no pain (albeit very nauseous all day) and remained pain free for the days following the surgery. After one night in the hospital I was released to go home. Brent, Mom, Becca and Dad were all at my house, ready to wait on me hand-and-foot. But I was fine. I had no pain. I wasn’t bedridden, didn’t need any pain meds, barely even took Advil. It was very strange for all of us and unexpected. The Monday following surgery, I felt weird being on medical leave from work. I even texted my boss that I felt like I was playing hooky. There honestly was no reason why I couldn’t have worked from home. But I didn’t. But I was bored.

By mid-week I was feeling very uncomfortable. The dreaded drains that everyone told me would be the worst part of the process turned out to be the worst part of the process. The drains didn’t really get in my way, the tubing just hurt on the inside. I was (and still am) tired of only being able to sleep on my back. I wanted them OUT of my body.

As excited as I was to get them out of my body, I was equally anxious about the drain removal process as it is just done in the surgeon’s office without any anything. Fortunately, it was a total non-issue. It did feel better when they were out, but I quickly learned that the tightness and soreness I was feeling was not only related to the drains. It was my new normal, for the time being at least. I took more Advil during the second week than I did the first, and experienced much more discomfort and pain than I had the first week. It’s gotten better over the weeks (it’s 5 weeks tomorrow), but I definitely still struggle with some discomfort, stiffness and difficulty reaching. Still, overall, it has been so much easier, physically and emotionally, than I thought it would be.

Physical Therapy

Now that the drains were out, the next step was to meet my physical therapist to improve my now very limited range of motion. I was very nervous because you often hear of the physical “terrorists” who take your existing pain and exponentially make it worse. Yes, there was some pain involved in that first session, but it was sweet pain mostly, and I felt instant results and relief. Anyone reading this who is on this journey or knows someone going through this journey, the most important piece of advice I can give you of anything throughout my journey so far is to demand to see a physical therapist who specializes in lymphedema and breast surgery patients. I feel so fortunate to have the specialist I have – she is amazing at her job, very knowledgeable, thorough and passionate. She has just the right mix of compassion and toughness to push me to the next level at every session. After 7 sessions with her (and many homework sessions that are still ongoing), I have officially been released. Most excited about the release are Millie and Murphy (my dogs), as she hesitantly gave me permission to begin leash walking them again.

But, I haven’t seen the last of her yet. My future holds two more reasons for needing to see her, which leads me to…

NED

Who is NED, you ask? He is no one, it’s an acronym for the three words any post surgical cancer patient wants to hear: No Evidence of Disease (ok, four words). When I woke up from surgery, still seeing double and drunk on anesthesia, my surgeon informed me that he saw nothing at all that concerned him, and, although we would have to wait for the final pathology report, he felt really confident that I am now cancer free. And the final path report did confirm just that. So, I am officially a SURVIVOR!

Decisions

When I first learned I was cancer free and that I had a clean pathology report, both my surgeon and my oncologist said I would no longer need radiation. My oncologist, knowing my nature, wanted me to hear it directly from the radiation oncologist though, to give me peace of mind. (Her exact words were: Since I know you would put matches underneath your fingernails if we told you it would make a difference, I want you to talk to him). So, I scheduled another appointment with the radiation onc expecting him to say the same thing. He didn’t. He said that due to my young age (even though I recently turned 40 – yikes!), triple negative status and the initial lymph node involvement (even though it was microscopic), he recommends radiation and can guarantee a benefit to me. While the benefit is not as drastic as it would be for someone with residual cancer, it will make an impact on preventing a local recurrence (radiation has no impact on recurrence anywhere other than locally as it only treats the local area).

I was very torn and confused. I trust and respect my surgeon and oncologist tremendously. They very recently saved my life. I wanted to listen to them. I wanted to be done with treatment and only be facing a now even simpler reconstruction process. But I could not get that nagging out of my head. I want no regrets, no what ifs. So, I asked the radiation onc to confer with my other two doctors and sell his point to them to see what they said. In the end, after much ado and anguish, I finally heard from all my doctors and they are all on board with me doing radiation, if for nothing else than my peace of mind. I’m convinced there is a benefit and even if it only buys me one percentage point, I will take it. So, radiation is back on.

Next Steps

Today I went to the radiation oncologist for step one…a “fitting” which consisted of a CT scan and lots of sharpie “x”s drawn on my chest and sides. They use the images to map the angles for the radiation beams. This type of radiation is very targeted and will only be on my right side in the area where the cancer was and small portion of my chest wall. I will have 28 radiation treatments. They will be daily except for weekends. When I finish those 28, he said they may do 3 additional treatments on the scar line. So I’m looking at about 6 weeks.

Many people have asked me about side effects for radiation. The vast majority of other cancer survivors I’ve spoken with who have been through it describe it as a walk in the park after chemo and surgeries. I’m cautiously optimistic that it will mostly be a non-event. A sunburn feeling and fatigue are the two most common side effects. My plan is to schedule my appointments early each morning and go straight to work from there without any issue. Each treatment takes only about 15 minutes start to finish. Hopefully my plan will be my reality.

I’ll know early next week when my start date will be, but it will probably be one day next week. Upon completion of radiation, I will need 3 months of recovery time (and full range of motion again which will require more physical therapy) before I will be ready for reconstruction. Reconstruction will be the more involved latissimus dorsi flap procedure due to the radiation (I may have escaped that if I had escaped radiation, although that was never confirmed).

My hair is growing back slowly but surely. So far it appears it will still be mostly curly/frizzy, same as it was before chemo. But it is looking salt and pepper colored. We’ll see what happens as it gets longer. In the past week, my eyelashes and eyebrows have returned as well. Just like that. One day there was nothing, the next day there were lashes and brows. They all have a ways to go but at least finally it is moving in the right direction.

So, that’s where I’m at. Five or six blog posts in one, and now everyone is caught up. I’m ready for radiation to begin and get the rest of this show on the road!

 

Triple Negative Breast Cancer

For those of you who have not yet Googled it, or those who did but may not quite understand what it means to be “triple negative”, I hope this post will help enlighten you.

Breast cancer is not a generic disease. There are various known sub-types (and no telling how many unknown sub-types). Currently, one way the disease is classified is based on your hormone receptor status.

There are three common “receptors” known to be present on breast cancer tumors.  The receptor status determines what they want to eat. I’m no doctor, but I tend to think of the receptors as the mouths of the tumor.There are three identified “meals” that breast cancer tumors feast on:

1. Estrogen hormone

2. Progesterone hormone

3. HER2 protein (this is a protein that everyone’s body creates but in some people it can have a mutation and over-express the protein).

When you receive the results of your pathology report on your tumor, it indicates which receptors are found on your tumor. Knowing this information identifies the sub-type of breast cancer and also helps determine your treatment path.

If you are estrogen or progesterone positive (also known as ER+/PR+), there are additional medications (hormone blockers) you can take on a long term basis to help prevent a recurrence. If they know estrogen or progesterone is feeding it,it only makes sense to block your body from creating too much of it. If you are HER2+, there is an additional drug you can take to prevent overproduction of the HER2 protein. This also helps in preventing recurrences.

You can be positive or negative for any combination of these three receptors. Some people are triple positive. Some have one or two but not the others. Obviously, any medications you can take long term to prevent a recurrence is desirable. However, if you are what is considered Triple Negative (like me), you are negative for all three of these receptors. This means no additional medications to prevent recurrence. The medications available are not helpful in triple negative cases.

Triple negative breast cancer is also known to be more aggressive than the other types. That makes it an even bigger bummer that there aren’t additional meds. It also has a higher rate of recurrence and a faster rate of recurrence. From what I have read and been told, it typically recurs within the first two years. And, if it is going to recur, most likely it will be by five years. If you can cross the five year mark with Triple Negative with no recurrence, then your chances of a recurrence after five years are actually lower than those of the more desirable receptor statuses.

So what can I do? There are lots of opinions, but from most of what I am reading, I can use diet and exercise as my “medication” to help prevent recurrence.  I don’t have a link to the study, but I’ve read that a very specific, strict diet (a mostly plant based, close to the earth diet) and 4-5 hours of exercise per week can reduce your chance of recurrence by 60%. I’ll take that. I’ve already implemented the new diet partially, although my chemo diet is a little more flexible than my post chemo diet will be. It can’t hurt right?

When my oncologist first told me she suspected my cancer would be triple negative (before we had pathology results), I asked her to level with me about it being the worst kind to have.  I’d already done the research. I knew what the internet said. It doesn’t sound very good. She responded to me that every type has its pros and cons, and that a best case scenario could be drawn on any sub-type of breast cancer. Since she said that, I’ve tried not to focus on the negatives and instead focus on what I can do to remove it from my body and keep it from ever coming back.