“You don’t get IT”, but it’s not your fault!

Th following is a guest blog post from an amazing friend.

I am one of the many faces of Metastatic Breast Cancer


In a culture focused on survivorship, those with metastatic breast cancer who will be in treatment for the rest of their lives can feel isolated and misunderstood

Let me educate you on what this means:

  • Metastatic breast cancer, stage 4 breast cancer, is a stage of breast cancer where the disease has spread to distant sites beyond the axillary lymph nodes.

    • Liver, Bones, Lung, Brain

  • Between 20 and 30 percent of women with early stage breast cancer go on to develop metastatic disease. While treatable, metastatic breast cancer (MBC) cannot be cured. The five-year survival rate for stage 4 breast cancer is 22 percent; median survival is three years. Annually, the disease takes 40,000 lives…I’ll let that sink in for a minute..tick tick tick. 

  • We will endure CT Scans every 3 months for the rest of our lives

  • Every 3 months, we have anxiety and anxiety that you can’t imagine

    • The results – we hold our breath and pray that cancer is at bay, not growing, not showing up in other areas

  • We will have some sort of therapy for the rest of our lives. 

    • Infusions every 3 weeks

    • Extra drugs to combat hormones

    • Most of us will endure Chemotherapy again, which means here we go again with:

  • Nausea

  • Gaining weight

  • Losing weight

  • Countless needed pokes at our portal

  • Mouth Sores

  • Rashes

  • Diarrhea

  • Loss of hair, including eyelashes and eyebrows 

  • Mood Swings – that we can’t apologize enough for

Think of it this way, we mentally live in a square with different levels of stairs.

We all come in on the first floor – this is where they give you the news of your port, how much chemo you will have and for how long. You may get a brief out lookout of your future treatment plans.
Then we must get the port put in. Read about how goes…it might scare you, I know I was 

2nd Floor leads to your first chemotherapy where we will be spending the next 3 to 6 months juggling doctors vs Chemo infusions every week for hours, sometimes 7 to 8 hours a day with our shortestest day 4 hours.

3rd Floor leads us to maintenance which may mean infusions every 3 weeks, extra drugs like Letrozole which have side effects of: think about that one for a minute…tick tick tick

Some people I have talked to have had to stop this drug and try another one.

  hot flashes

 hair loss, 

 joint/bon/muscle pains 

 tiredness – LOL that stays with you for a while

 unusual night swats – invest in a couple of extra sheets

 nausea, 

 diarrhea, 

 dizziness, 

 trouble sleeping, 

 drowsiness, 

 weight gain, - I say HA bring in on, 2oz at a time would be good 

 weakness

 flushing (warmth, redness, or tingly feeling), 

 headache, 

 constipation, 

 numbness/tingling/weakness/stiffness in your hand or fingers, or 

 pain in your hand that spreads to your arm, NEVER be CURED writs, forearm, or shoulder

4th Floor the floor we hope to never reach.   4th floor may mean surgery, radical drugs or the worst hospice-another friend is gone.

However, we can bounce to floor to floor at any time.  So, we may sit on 1 or 2 for years hopefully we can get a reprieve. 

We know that we will fight to keep the cancer at bay, if that’s what the cancer wants to do. 

  • Thinking of the future can scare the hell out of us – I hope I live to see my grandchildren
    can you imagine that thought running through your mind every time you see your grown children?

  • Angry, Stress, Outraged, Depressed, Scared are many of the feelings that we have

    • 5% this is where we could be at any time 

    • 95% of the time we are positive and as a matter of fact – can’t change what I have

How can you help? Please reread what you are sending us! We know that you are saying things with the BEST intentions. 

Things I’ve heard: 

  • Your just not being positive – read above

  • Your giving up – really you can say that to me? 

  • I’m Sorry – for what you didn’t do this? I heard a good response for this “Don’t be sorry, donate” 

  • When I look at my life, its not so bad compared to yours – sorry but WTF 

  • My favorite – What can I do for you? I don’t know, just do whatever you feel is good to do

    • I’ll never say no to a home cooked meal 

  • Not that I hear this per say, but I see it your eyes when you give me the pity look. I’m just out doing my thing shopping and have a great time and your look is just a reminder to me of what I have. 

When we post how we are feeling, it’s just that! We love your best intentions to respond. But the best response could be, hang in there, you’re doing great, I’m proud of far you have come, when’s a good time for a visit, let me help you with etc. Say things like this let’s us know that YOU GET IT. 

I know that you will not truly understand what we go through because, you can’t unless you’re in the same boat (I would never want that). 

To tidy this up, we love you and we so appreciate all the support you give to us.  We just want you to have a better picture of what our life is like. Plus we are trying to educate the public!