Guest Post: "Wake Up" - Kyle

The Today Show is having a special on October 1st to highlight Breast Cancer Awareness Month. They initially were going to focus on Joan London's recent Dx with Breast Cancer & then after a fellow stage 4 breast cancer sister emailed them asking to increase awareness about Stage 4 and Metastasis, the show offerred to have her on as well. The Today Show asked for my fellow sister's picture and then denied her appearance on the show when they found out she had hair and was not "bold and bald." Many women I know have been emailing The Today Show outraged about their stereotype of this disease, most likely to glamourize cancer. My boyfriend, Kyle, was angry & he wrote something about his views on the situation. I decided I wanted to post it on my blog.

Here is his guest post. Please share and let people know that The Today Show is in denial.

I'm a bit pissed off.  I'm not the most well-spoken human being, and I rarely post or even rant, but here we go…

This morning I found out that the Today Show is doing a piece on young women with breast cancer.  They reached out the community and asked for people to be on the show to talk about their realities. When contacted by a young woman with stage 4 cancer about her interest in coming on the show to advocate, they denied her because she was not bald.  I believe the response was "I'm sorry but we're looking for bald and bold."
 
Not every person who is sick "looks" sick.  I'm not trying to take anything away from the many women out there dealing with cancer and have lost their hair, but rather point out that the media is controlling how the general public look at issues that have become incredibly important in society.  My girlfriend and many friends that we've made along the way have stage 4 cancer and look well.  I bet you no one would ever even suspect that they're dealing with this horrible disease.

It is irresponsible to ignore the other sides of cancer.  We're providing people with only a small percentage of the truth when it comes to how cancer affects different people.  YES going through certain treatments may leave you bald.  NO that does not define what cancer is for those who have been diagnosed.  And re-diagnosed.  And re-diagnosed.  And RE-DIAGNOSED.

Actually allow the women who want to share with their community the reality of their situation to come on your show and advocate.  To make others aware of what can happen and to show the world that their views of cancer are skewed. Beacause of the lack of "awareness" and focus on Stage Four Cancer Women with stage 4 breast cancer see the least amount of funds devoted to research. 3% of funding goes to stage four and 30% of women diagnosed with breast cancer will eventually get stage four breast cancer (whether that is 1yr or 20yrs after the initial diagnosis).
 
If there's going to be an end to this thing ( Better treatments, etc), then more people need to know that having cancer is not always something that can be seen on the surface.  It's something that throughout the rest of your life will be something you wrestle with inside of you.  You never know if it will come back.  You always feel like the seconds are ticking away until it does.  You try to live your life clean, and healthy to keep it at bay.  You are constantly living in fear.  It might not show, but it's inside.

Granted, I'm speaking from the view of a caretaker.  I've been with my girlfriend since before she was diagnosed. I love her more than anything.  I want a future with her where cancer is not in the equation, but that is never going to be the case.  And that's just scratching the surface of how I feel.  But how I feel doesn't matter.  I can't imagine nor hold a candle to the many others out there who have to live their lives with this disease haunting them.

Another thing to consider…if you think about it, there's most likely someone in your life who either has cancer, or will have cancer in the near future.  There's an equally good chance that you will think "that person's too young."  It's an epidemic.  If you don't realize that then you're living under a rock.

I really hope that I've spoken in a way that does not cause the cancer community to be upset with me.  This message should not take anything away from any of you.  I just wanted to say my piece about the importance of making people aware of the realities of all stages of cancer, especially in young people.  It is most certainly not my intention to upset anyone.  You are all stronger than I will ever be.  Whether or not you are bald, you are all some of the boldest people in this world and it would be a privilege to know any of you.  Keep fighting the good fight and keep living your lives.

August was a Blur

When I last posted, I discussed how I was nervous that my tumor markers would creep up. On August 15, I learned my tumor markers jumped 100 points. My mind automatically was flooded with the worst thoughts - fear that the cancer had taken hold in my organs, it was actually forming a solid tumor, or that my medication was not working. I was seriously hoping to make this August BETTER than last August - good blood-work, no scans, less doctors visits. It did not work out that way, I did have a great August & spent plenty of time at the beach. On the other hand, my August began to be filled with doctors appointments and scans & fear. The Cancer PTSD reared its ugly head and my mind was in a fog and my body was on autopilot.

On August 18, my doctor said the words that every cancer patient does not want to hear "progression." Rising tumor markers can or cannot be progression of the cancer. The only way to rule that out is to have CT Scans of the Chest & Abdomen and a Bone Scan (and for some with Brain Metastasis or Cognitive Symptoms a Brain MRI). After my tri-monthly Zometa infusion, I was sent off to have the scans. I got to spend the next day to be poked and shipped around the Hospital Radiology Department crossing my fingers & toes for good scans. Then I waited. I went to work, I dealt with all my clients problems & in the back of my head I wondered what those scans said. I continued to project the worse... how could I not? I forced myself to ground myself and remind myself that I felt great and should be OK. I had to distract myself with my kitten, my friends, the gym, and work. It was all I could do until I saw my doctor on the 25th.

Here comes the 25th and I find out that my CT Scans were stable and had no changes since my most recent scans in May. No cancer was in ANY of my organs and a tiny bit of fluid continues to remain the in the pleural lining of my left lung. My bone scans were better than 1yr ago. Actually all the scans were better than 1yr ago, yet the markers were the same as they were before I started my current treatment. In this case a doctor is at a crossroads, so as a patient we stand there at the crossroad & there are two options for treatment at this point.
     1. Change to the next line of anti-hormonal/targeted therapy even though the scans were stable and base everything off the Tumor Markers.
              OR
     2. Stay on the current medication, wait  6 weeks, and restest the blood to see if the Tumor Markers drop, stay the same or rise.

My doctor chose to stay on the current medication (Femara Daily, Zometa IV every 3mo, and Lupron IM Shot every 3mo). Now I wait 6 weeks. Does this mean things are good. Not really it means I am in the grey area. It can mean any of these things starting from the best to the worst.

   1. The Markers rose due to some other inflammation going on in my body & it was a fluke, so the Femara was working and the markers drop when I eliminate whatever I was eating or doing causing me issues (which considering I am gluten-free and eat organic and do not eat sugar, it really does not leave much). Kyle and I think I was eating soy sauce infused Beef Jerky, so maybe that was it.

   2. Femara is working and this was the last growth spurt or flare from the tumor dying off and expelling its dead cells into my blood.

  3. Femara is not working, my markers continue to rise & in 6 weeks we have to change my medication. This means I will no longer be able to take Femara or Arimidex alone and I move onto real medication i.e. oral chemo.

We are not out of the woods. On Sept 30, I go to the lab for blood draw & on Oct 8, I find out what we are doing. I might feel great. I might look great. Inside I am worried. I plan on spending this month distracting myself with the gym, my kitten, my friends, and a good book. If the cancer is progressing, there is not much I can do but hope that my next medication gives me more than 1yr of effectiveness. If the cancer is not progressing, then I get to be tested and poked and prodded every 6 weeks until my markers start to drop again.

If people are wondering Femara has been no trip to the park. I am tired. I lost 10lbs in 1mo back in August 2013. I swell like a pregnant lady. I can't sleep without taking Melatonin. My joints feel like the Tin Man on most days. It hurts to type, to write with pen, and to use my fingers for any long period of time thanks to Arthritis at 30.

If I have to change medication, the symptoms I hear get worse. The worst of it is the chemotherapy called Affinitor, which is paired with Aromasin. Aromasin is another anti hormonal that has the same lovely side-effects that Femara has. Affinitor has typical chemotherapy side-effects - mouth sores, fatigue, impaired healing recovery, affects the liver & kidneys etc. The list goes on and on. It also came in a nifty bag like this one:

I really do not want to swallow something in a Hazard Bag. I really hope that this marker increase was a fluke. Flukes are rare in the world of stage four cancer. Maybe I can be rare, maybe I will be fine. I feel fine. Pray for me.

Tumor Markers

In April my tumor markers dropped 100 points since November. The good news was overwhelming, but at times you live in fear for the next shoe to drop. I pray and hope things keep going well. I feel well, but alas I am afraid that cancer is very sneaky and will grow. Here I am coming up on my 3mo check up and more blood work. I hope these tumor markers drop. Please pray and hope that things stay stable or continue to improve.

<3 Cait

Spring! Finally!

A year ago I was trying to train for a half-marathon, work two jobs & a weekend shift, and live my normal life. I was tired. Very tired. My asthma was acting up when I was running and I thought it was because I was doing too much. I dropped out of the race & eventually stopped the weekend shift at work. I was still tired. I slept a lot, I napped a lot, but I felt no pain and no issues (or at least I thought I had no issues). I was starting to get worried that I was tired because of some long-term side-effect from all the cancer treatments or another illness. I thought it was the celiac disease or that I needed to dial down life.

Months passed and it was July. Around that same time of year we have to get TB tests done at work. I missed my appointment at occupational health & decided on a whim to just get the test and an annual physical at my Primary Care. That split second, impulsive decision is what saved my life. Who knows how long I would have gone on before I got "symptoms" from the malignant pleural effusion forming in my left lung. Knowing how I work, I would have not noticed for months, kept moving, kept working out, and never connected "cancer" to being tired. I made that appointment & luckily I saved my own life with a routine EKG.

I post that story as recently I have been thinking about how great I feel. Each day I feel stronger and with each week I realize that I am not tired. I think back on where I was in 2010 before the first diagnosis ... I was tired all the time no matter how well I ate, how much I slept or how much I rested. This is not the type of tired where you might be over-worked or did not sleep through the night. This is the tired where you feel like a boulder is on your head and lead is filling in your shoes. I haven't felt like that since October 2013. Come to think of it, I was less tired post mastectomy, during chemo and the entire first 1.5yrs after chemo than I was in early 2010 & 2013. Energy is a sign that my cancer is going away. Strength is a sign that my body is coming back to me.  

My doctor said "Listen to your body and how you feel." I have been making an effort every morning for almost 1mo to get up and go to the gym in the AM. I feel great. I am strong, my lungs feel good and I have no strange aches or pains in my bones. I am taking this as a sign that I am getting back to feeling good. I have been lifting heavy, running, and doing sprint-work. I feel like I am doing these things without effort. Each day I make the effort to recognize that my body feels good, to remind myself that I am not tired everyday, and that I have energy to do more than I did a year ago. These things are sign that I am getting better, things are getting better & my blood work will be good. I am also putting back on muscle. The other day I leg pressed 260lbs, that's twice my body weight. I deadlift my body weight. I can run 2miles straight and 3miles with sprints. This is not average for a person living with cancer, but this will be the norm for how I live with cancer.

This was just two weeks ago after a back workout and sprints. I am sure more selfies will be posted.

I have no new updates in respect to my treatment. I am still on the same medication - daily Femara, Lupron every 4mo, and Zometa IV every 3mo. I am due for my tumor marker & CMP tests in three weeks & see my doctor on the 28th. 

Please pray for me and hope that in 3 weeks I have a good report from my doctor. <3

White Winter...

I have not posted in 1.5mos. I am getting bad at updating the blog again. I have been incredibly busy, which is a good thing. I have had more energy to do more, so less time is spent by my computer on my days off from work. Naturally the pace of my blogging has slowed down. This winter has been hard on everyone, and as we know winter can bring on cabin fever. People get crazy, restless, depressed, because all you get is snow and cold days.

I do have to say that I have had my fill of snow, but I have had a new found appreciation for the winter. I have shoveled 3 of the 4 major snowstorms we had because Kyle works in NYC. Some days I doubt the progress I have made and I remind myself that on those days I shoved 4-18inches of snow, proceeded to probably clean the house, cook, and workout. Not many people in my situation could say they can do those things. I appreciate the snow for reminding me that I am still strong, capable and getting back to normal each day.
 
The cold has reminded me to take it slow. The lack of estrogen has left my joints achy and swollen. Estrogen apparently plays a role in keeping our joints lubricated. The cold has made this worse. My knuckles are swollen and sometimes my feet swell and can only fit into old Uggs or a stretched out pair of Chucks. I complain about this, but it could be worse. It still is hard to get moving in the morning. I wish there was a cure for this, but the only solution is warmth and to move. So I move...

Moving is what has been keeping me sane and busy. If I stay still, the cabin fever sinks in and I get engulfed with the "what ifs" and I cannot let myself get eaten by those worries. Therefore, the amount I move is definitely pretty incredible for a person who has Stage 4 Cancer cells floating behind their chest wall and on their lung cavity. It is also pretty incredible for someone who has had 3 major surgeries, 16 rounds of chemo, 28 zaps of radiation, two doses of Hormone suppressive therapy & has been forced into chemical menopause. It is also incredible for a person, despite cancer, struggles with anxiety and depression on a day to day basis. Have I mentioned that I also have lymphedema, syncope, and titled patellas on my knees? I could give up, but I move.

This was taken on Jan 24... the day I learned my Tumor Markers dropped 60pts. It is not much, but it is much. I ran 3mi. I have not ran 3mi since June 2013. In July 2013, it became hard to climb stairs, but I climbed. In August 2013, it was hard to walk at a fast pace, but I walked. In September 2013, I went on the medication that started to kill the cancer spores. By October 2013, I was back at it full swing minus the running. I honestly never thought I would run again, but I proved myself wrong.

I wanted to end this post to remind people that when things get rough, they get rough. It is not like you will not doubt yourself, think the worst or worry about when things will get better. A small voice of hope is inside all of us. We have the choice to amplify that voice and apply that hope. I moved, because I hoped that things would get better. I wanted to be the example for other young women with cancer. I want you to realize that you are stronger than the cancer. What you think you will lose, what you start to doubt fight it!

I will continue to fight this. I might not post a lot, but lately my mantra is - "My lungs are fighting, because my heart is strong."

I see my doctor again on April 28. I get my Tumor Markers tested 1 week prior to hope that this treatment is still working. In the meantime, I will keep on moving and fight the doubts that creep in.

anxiety sucks

I am just riddled with it.... I got my tumor markers tested today and the anxiety about that interfered with work and I missed seeing a client. Therefore more anxiety pops up...

Snow- anxiety, blood - anxiety, tests - anxiety, making money - anxiety, working two jobs - anxiety, worries more worries and then some.

So hello anxiety lets treat you with some exercise and chocolate and kittens....

I have to remind myself one day at a time and worry is time wasted. I can only do the best I can.

One Month, two scans...

I haven't posted in a month. I haven't been handling this "stage 3d" stuff well. I am always hard on myself and I have spent the last 4 weeks progressively being more hard on myself. Most people who read what I just typed are probably thinking - "this girl is crazy, her last post was all about beating the odds." The problem with MY thinking is that I expected that this cancer would be gone by Christmas. Its an unrealistic expectation, like many others I have put on myself time and time again. Since it is not gone and since I have yet to get a clean bill of health, I have been ruminating about all the things that I DID WRONG to cause this. So here comes the self-blame followed by the guilt, shame and anxiety. Lately each day I walk out the door with this sense of  impending doom thinking "when will I have to not worry about this again," or "when will this all be normal again and I can actually PLAN ahead."

Needless to say, I have been spending too much time in my head and that is a pretty dangerous place to be. I have forgotten to take one day at a time and it has led me to become a depressed Grinch who has started to give up on the things she enjoys. I have slowly been avoiding the gym living in fear of what I could lose due to cancer - my physical strength. I have been sitting home worrying that a knot in my muscle is a tumor (yes, this is the truth) and that a stuffy nose is the fluid filling up my lungs and worsening. These thoughts are what happens to a person with anxiety that lives with cancer. Its starting to consume me and its pushing me to the brink of being able to diagnose myself with the DSM.

I was letting my emotions control me this past month. Even given the evidence I received from having stable scans last week, I was an emotional mess. My doctor reported that we can't say that there is still not cancer, but its not worse & the organs look healthy minus the fluid. This means that the pesky lymph nodes in my chest wall are gone and the fluid is finally less than 2cm in my lung. I am posting this as a reminder to myself that things are not that bad. It is not perfect, but it sure could be worse.

Yesterday, I talked to my boyfriend about this and he gave me the same advice I give everyone - "get out of your head its a dangerous place, take one day at a time and breathe."

Today, I forced myself to move today and get to the gym for some solace. Lately I have been ruminating about how I have not ran more than 5min since July. In August, my lungs became to heavy from the fluid I could barely walk or run. The fluid remained until October and I avoided the treadmill out of fear. I was letting fear guide my life. I reminded myself of what I was doing and told myself - "The only way out of fear is to face it. "

...I got to the gym and walked to the treadmill. I started by walking for 3min and then I found myself running. Yes, I was running and I ran 1mile and change. I was slow, but I ran. I could breathe and not hear an ocean on my left side. It was in that moment that I realized that I have yet to lose my strength and I am actually doing better.