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.