Almost Celebrating End of Treatment for #MyLeftBoob

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A week ago I was getting radiation for a “rare and aggressive” type of breast cancer only 1% of women get. Two days later I was on an insanely fast roller coaster with my kids, screaming my head off, celebrating no more treatment (almost). That brought to mind a quote from my oldest son’s favorite movie, Ferris Bueller:

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Today marks one week since I completed 6 weeks of radiation, Today is also 3 months since I finished 16 weeks of dense dose ACT chemo for Metaplastic Triple Negative breast cancer.

It’s 4 a.m. and I can’t sleep again, which seems to be the norm lately due to radiation burns and other issues. Later this morning the hubs and I will travel to Sloan Kettering Cancer Center in NY for my 3 month checkup.

In the week since I’ve updated, there have been 2 more women in my life who are just starting their cancer journey. They are both private so I won’t write about them, but I’m so glad to be here to answer questions and lend support.

The best advice I’d give to anyone just starting out is:

  1. Listen to your body – rest when you need to
  2. Learn to say “NO” – so many people will want to pop over & spend time with you & that’s the last thing I felt like doing. I was just trying to get through each hour of each day while working and being a mom.
  3. PUT YOUR BLINDERS ON! My doctors told me this so many times and I wish I listened. People will tell you every cancer horror story & the truth is that everyone’s diagnosis and reaction is different,
  4. STAY POSITIVE- pray,meditate, watch comedies, don’t answer your phone/texts/email if it’s from someone who will stress you out or make you fearful. This is a time to focus on your treatment and recovery.
  5. Find a support group that is truly supportive and positive.

If you are a family member or friend of someone going though treatment, the best thing you can go is to stick with your patient the whole time and let them know you care. It’s a long, hard road and some people drop out after the first couple of months. Maybe they’re tired of hearing about it. Maybe it’s depressing. Maybe they feel like they don’t want to bother you. Getting a quick text or Facebook message to let us know you still care and are still here for us is certainly no bother and is very much appreciated.

And when the treatment is over it doesn’t mean we’ll be back to “normal” right away. It takes months for all the chemo drugs to leave our bodies and for the symptoms to go away.

So how am I doing 3 months post chemo?

  • Chemo brain (Google it, it’s a real thing) is still here. I forgot about 2 appointments this week and feel like I’m forgetting to do something, or I can’t remember the words I want to say.
  • Red, bumpy, burning, itchy skin from radiation is still a problem but getting less and less.
  • Neuropathy in hands and feet is still bothering me but not as much. It hurts most when I first wake up in the morning and hurts to walk sometimes. The numbness comes and goes in my fingers which is a challenge because I do need to type for a living.
  • Chemo induced early menopause– not a fun thing to talk about but it happens….and that could be why I’ve been waking up in hot sweats and getting horrible sleep.
  • Eyebrows and eyelashes are back. Hair is coming back in and super short still. IMPORTANT beauty tip: If you have red or blonde hair and are thinking of dying it right away- don’t. Mine turned orange….one of the things people forgot to tell me. It has something to do with the new hair coming in- or red going on top of grey hair or something. I’ve been told I look like Mia Farrow and Annie Lennox, which I’m taking as a compliment.
  • The “X Marks the Spot” scar is still prevalent but I don’t mind, it’s one of my warrior scars- surgery area is still sore 2 1/2 months later.

Sleep escapes me because I have so many questions firing through my brain…. sort of like those firecrackers you threw on the ground when you were a little kid….bang! bang! pop-pop-pop-pop! It’s so loud I can’t keep up enough to write them all down so I write here. Studies have shown that writing is one of the best forms of therapy for someone going through this battle.

I still have one more surgery to go and due to the type of cancer I will need follow-up checkups every 3 months for the next 2 (?) years because I can’t be on any follow-up meds since I’m Triple Negative. After the 2 years it goes down to every 6 months for 5 years I believe.

The aftermath will be long-term. It’s a war we’ve fought, and are still fighting, and there are physical, financial and emotional scars that need time to heal. I’ve read that cancer patients actually can get PTSD from the trauma of what we’ve been through. I can definitely see how it can mess with your head. The key is to keep your mind busy with good thoughts, focus on other things, and even helping other people. A small act of kindness goes a long way and makes you and the recipient feel so good.

I was supposed to start at the gym this week but lack of sleep, my daughter’s field hockey games and 3 doctors appointments threw a hitch in my giddyup, so I’ll have to start small next week. I’m not going to beat myself up for not beginning on time. I know I will get there eventually.

The past month has been tough- 3 of my husband’s friends’ fathers, and his aunt, all passed away. A girl who goes to my daughter’s school lost her dad unexpectedly due to a heart attack. Another friend lost a lifelong childhood friend in his early 50s who took his own life. Life is rough, life is short but it’s also amazing and wonderful and full of beauty and grace if you look hard enough. Nobody is promised tomorrow and when you stare death in the face, as I have, you learn to let the small stuff drift away and enjoy each moment you’ve been gifted because life is a gift.

Life moves fast. So stick your head out of a sunroof, scream loud and beep the horn every time you go through a tunnel, go on roller coasters and celebrate each breath.

“People usually consider walking on water or in thin air a miracle. But I think the real miracle is not to walk either on water or in thin air, but to walk on earth. Every day we are engaged in a miracle which we don’t even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child — our own two eyes. All is a miracle.”  ~Thich Nhat Hanh

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