Life’s Difficult Lesson

5.1.2017

We all die. That’s the one universal truth, I suppose. Nobody approaches this topic better than my friend Janet (see all my links below to her talk, music video and article). I met her through BAYS and boy am I glad I did. She is a spitfire and she is wise. She is a bright light and she is intense emotion. She is alive and she is dying. She is a contradiction. She is…..well, she just is.

Janet’s been metastatic for many years. She’s enjoyed periods of non-treatment and periods of intense treatment on and off for 10 years.  The first time Janet and I hung out one on one a few years ago, we talked about her reality. She’s the first Stage 4 metastatic person I’ve ever been close to. She told me that she’ll be in treatment for the rest of her life until the treatment simply stops working or she decides to stop treating.  Plain and simple. Black and white.

See, that’s what I adore about her. No bullshit. When she paid me a surprise visit early on during my bedrest stay with Peter. She didn’t mince words. A pediatrician herself, she knew the shit we were up against. I told her some of my naive thoughts, and she calmly, yet gently brought me back to earth. Preparing me for the potentially devastating outcomes that might’ve been for Peter. I’m so grateful to have someone like that in my life. A straight shooter who cares and comforts at the same time. Perhaps its the cancer club that makes us this way? I dunno. But it’s a sisterhood beyond anything I’ve ever experienced in my life.

Now, it’s my time to be there for Janet.  She’s at a crossroads and her treatment is diminishing her quality of life — which until this point — has been exceptional. When I sat with her at her house last week, she shook her head and told me “This isn’t living. How I feel — this sick and weak– this isn’t a life.” I read between the lines, but she went on to be very clear. She’s seriously contemplating stopping any further treatment. Chemo isn’t working. Isn’t going to extend her life measurably and is making her feel like shit. Rendering her useless on the couch all.day.long. For someone who scales mountains on the regular — she is down and out.

In the non-cancer world, we’ve all been conditioned (for some odd reason) to rally and cheer and champion someone who is dying. “keep fighting” “don’t give up” “you got this” “are you sure?” “just a little while longer” “keep going”.

Now that I live in the cancer world, I intrinsically know that when someone tells me they’re done — I get it. It’s not something to decide on a whim. It was extremely heart wrenching for me to just nod my head at my friend, blinking back my own tears, while holding her hand and telling her it’s ok if she wants to stop treatment. Make her *feel* my support for her decision. Don’t put her in position to comfort me. Don’t put her in position to defend her decision. Selfishly, of course, I want her here on earth as long as possible. But realistically, at what cost to her? It’s not worth it. I love my friend and I want what she wants. Only she knows what’s best for her. I’m just here to support and love her.

Oddly, when Janet visited me in the hospital when I was on bedrest with Peter. I remember making a joke that “surely this penance will buy me out of any cancer recurrence or metastasis, right?!” I went on to say that if I were to get cancer again, I wouldn’t have the strength to enter treatment again. Having been knee-deep into bedrest at that point I was physically and emotionally spent.  I was tapped out. Janet didn’t say what most would….. “oh don’t worry, you won’t get cancer again!” She didn’t shy away from it. She simply said “you’ll find the reserves to do it. you just will.”

Knowing that’s how Janet approaches life. I fully respect her decision to be done. I know she found her reserves and she’s tapped them to the max. Damn, has she ever lived. I am truly honored and privileged to know her and hug her and love her. I will continue to do so for as long as I can.

Below are links of Janet’s speech, music video and an article about her. Janet I LOVE you and insist on celebrating your great, big, bold life NOW.

HuffPo

My second piece is live on HuffPo, check it out!

http://www.huffingtonpost.com/andrea-ghoorah-sieminski/7-things-to-know-while-youre-undergoing-chemotherapy_b_7942272.html

xoxo,

Andrea

7 Things to Know Before Starting Chemotherapy

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When I was diagnosed with breast cancer in October, 2012 at the age of 37, my world was turned upside down. My particular flavor of cancer was stage 1, grade 3, triple negative infiltrating ductal carcinoma. That’s a mouthful huh? I had my bi-lateral mastectomy performed and one month later I began 6 months of ACT (Adriamycin, Cytoxan, and Taxol) chemotherapy.

While I can’t guarantee that your road will be without bumps, in fact, I can almost assure you that there will be bumps, I can offer you some insights that helped me along the way. So, buckle up and hold on tight, you can do this.

Good luck to you my friend. I’m sending you love and strength.

1. Get a temporary handicap placard

Cancer is a full-time job with a million and one doctor’s appointments. Do yourself a favor and sign up for this with your local DMV. Most states let you do it online. Be warned, it can take a few weeks to process and receive the darn thing, so put this one near the top of your list if you can. Trust me, you will be overjoyed when you easily locate a spot by the front door of your destination.

2. Discuss you fertility preservation options

I’m always amazed at how many women and men aren’t told about the effects that chemo can have on your ability to conceive.  If your team of doctors hasn’t discussed this with you, make them.  Ask questions and demand answers.  Since we haven’t yet figured out how to turn back time, I don’t want you to regret not knowing about this. Don’t let anyone pressure you one way or the other on this front. Do what feels right for you.

3. Start a Blog or CaringBridge site so you don’t have to answer the same questions again and again

When a medical event like cancer happens to you, everybody wants to know what’s going on. It’ll become difficult to talk to every single person who cares about you, so use social media to keep everyone in the loop.

The crazy thing is social media will ultimately keep your spirits up. Your friends and family, far and wide, will rally around you. You can read their notes and comments when you’re feeling down.

You can also use your blog to ask for help. Everything from food delivery, babysitting, carpooling, errand running or just having someone stop by to sit with you, You name it, they’ll do it. I promise you.  People are good, and they desperately want to be of service, so let them, because they love you and want to help you.  P.S. I assure you that they don’t think you’re a burden (I know your mind was drifting there, so let me stop it for you).

4. Join a support group

Nothing makes the shitty cancer journey more bearable then a bunch of crazy, been-there-done-that like-minded individuals. It’s been my experience that my support group friends have become my family. They party the hardest, love the strongest and know exactly where I’m coming from.

We talk about our experiences but are very respectful of the fact that no two individual’s cancers are the same, even though the diagnosis might be very similar. Everyone’s journey is intensely personal. Surgical and treatment decisions are yours to make alone, but your support group will be a wonderful, and helpful sounding board for you.

If you are like me and were diagnosed at a young age, check out the young survivor groups in your town and nationally.

5. Have a plan for your hair

If you have small children you may opt to get a wig for continuity’s sake.  Or you may opt to rock the bald look like I did.  You may even be going to cold cap route.  All of these options require advance planning and lots of mental preparation.

My plan was to cut my hair into a short bob and donate my ponytail to love for locks at the very start of chemo.  Two weeks later when, when it started to fall out, I buzzed it close to my scalp.  A few days later, when those tiny hairs were raining down onto my floor, I lathered up and used a straight razor. Nothing can really prepare you for the hair loss part.  My husband tried to pump me up by playing the Demi Moore video from GI Jane. If I’m being honest, the whole thing was really difficult for me though.

You will also want to have lots of cozy, soft head coverings at the ready. Most oncologists’ office will have a basket with tons of options that are free.  Take advantage — I got some of my cutest hats that way.

6. Get your medical marijuana card
This assumes you live in a state where this is possible. I never, in a million years, thought I’d be vaporizing in the middle of the day. But, heck, when you’re feeling as green as I was, you’ll do just about anything to make it go away.  Medical marijuana really helped me with nausea, pain relief and insomnia.

7. Ativan is your friend

Often times I was scared shitless that I got cancer and had to have a bilateral mastectomy and do chemo. When my mind raced and my thoughts backed me into a corner, Ativan really helped me settle down and face the next hurdle head on (albeit, bald!).

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I hope these tips and suggestions help you to prepare yourself in the days and weeks leading up to chemo.  Stay tuned for my second installment “7 Things to Know While You’re Undergoing Chemotherapy”.

Hello, I Have Cancer….

I wrote this two years ago and just came across it in my draft posts. I added a little bit at the end to bring it up to date. Enjoy:

So I was watching the Tig Notaro Netflix documentary and I decided it was high time for me to write my own reflective story. So here goes:

Hello, I’m infertile.  I thought the very worst thing in my life was that I couldn’t get pregnant.  For years my husband and I tried. We tried the old fashioned way. We tried the least invasive way. We tried the middle of the road invasive way We tried the most invasive way, multiple times over. Yet no pregnancy and no baby.  I wept and I wept every single month that we failed to get pregnant. And I say “we” loosely.  When you struggle with infertility, it quickly becomes an “I” game, not a “we” game. I had to do all the shots, I had to take all the hormones I had to check my underwear everys single time I went to the bathroom praying that my period wouldn’t show her nasty face. Sure, my husband was also infertile in a way — but he wasn’t physically going through anything. It was all on my shoulders and I was failing, miserably.

And after three years of infertility treatments, including 10 IUI’s with and without injectables and 4 IVF rounds including a few frozen embryo transfers, we still were without a child.

It was the worst kind of hell a person could be asked to live through.  I was working full-time at a very demanding start-up company.  I was juggling my personal hell with my professional goals.  It was horrible. I was miserable. I thought it was the very worst thing that could ever happen to me in my whole entire life. And then I was diagnosed with cancer.

If I could go back and whisper in my own ear, here’s what I would tell myself.

Andrea, hold tight to Paul even though you’re mad that he doesn’t feel “in the mood” and your ovulation window is closing. Hold tight to him because you can’t have a baby anyway. Hold tight to him and love him purely. You are about to find out that having a baby the old fashioned way isn’t an option for you. So hold on to this connection as long as you can. Nobody really talks about it, but having sex “on demand” is horrid — it can break a couple in half quickly. So hold tight to this loving man who appreciates you and your body, even though it hasn’t yielded a baby.

Andrea, you’re now 8 months into your fertility journey. Keep your head held high. You’re doing the right thing. It sucks to have to give yourself shots and that you cringe every time a friend posts her ultrasound to Facebook announcing her pregancy. Remember, she doesn’t know what you’re struggling with infertility because you’re intent on keeping it a secret from the world.

Andrea, why are you still keeping this a secret? It’s now been 3 years since you started this journey. your medical expenses have topped out over $100,000 and you’ve given yourself over 1,000 shots to the belly. Don’t you think it’s time to share this complete fucking hell with somebody?

Andrea, don’t you feel so much better now that you’ve told your family what you’ve been struggling with. Honestly, this has been the WORST thing imaginable. But it’s been really nice to have their support. You feel a new sense of energy and sticktuitivness, Ready to conquer the next hurdle.

Then you feel the lump. You talk to Paul about it but try to brush it off. You talk to your fertility nurse about it and try to brush it off.  Then the lump persists. You can’t ignore it. You go to the doctor and she fells it and orders some follow-up tests. Still, in your mind, you brush it off. What.could.be.worse.than.3.years.of.infertility?

Breast cancer.  It was laughable to me when it happened. Fucking hilarious. Seriously, for real?

After all that’d I’d been through, I got cancer. Wow.just.wow.

Andrea, just hold on a little while longer. 2 more years. You can do it. You can handle having your breasts amputated. You can handle surgical recovery. You can handle chemotherapy. You can handle your body being reduced to a lump of shit with no muscle definition or endurance. You can handle testing your marriage, yet again. You can handle it all.

Andrea, you can handle it all — but you will have your moments. You will have those times when you dont want to be the superhero. When you don’t want to smile through the tears. When you dont feel like asking another person how THEY feel. When you want to be selfish and cry. and weep. and weep. and weep. and wallow.

Andrea, your beloved dog will die unexpectedly just as you are feeling like yourself after chemo is finally done. This will knock you an on your ass. You will question everything that you thought you understood in this world. You will become angry. More angry than when you found out you had cancer, You will be sad. So sad. Sadder than when you couldn’t have a baby month after month after month.

You truly thought you’d been dealt the worst of the worst. First the infertilty, then the cancer, then your fucking dog died. What next? How much lower can you go?

Andrea, you will look up through your tear-drenched eyes and see the love that your husband has for you. You will realize he is all you need in this world. Baby, no baby. Dog, No dog, Cancer, no cancer. He is your salvation. Stop taking him for granted. He is incredible. Look no further. He’s been at your side the whole time. Quietly and not so quietly rooting for you. Whether you know it or not. He’s been your biggest fan.

Andrea, you’ll get the type of cancer that’s incerdibly aggressive — BUT it’s the kind with no aftercare for 10 years. You can hop yourself up full of hormoes and still carry a pregnancy.

Andrea, you will become pregnant and enjoy every single second of it, including the birth.

Andrea, all of your wishes and dreams WILL come true and you will be happier than you could’ve ever imganined. You will want to bottle the emotions because they’re like crack. You could make a fortune selling this feeling to other people.

You are one lucky son of a gun. What a long strange trip it’s been.

Post script – you get pregnant for a second time and almost lose the baby at 22 weeks. Life seems likes it’s at another all time low.

Andrea, hang in there. After an emergency surgery and nearly 8 weeks of hospital bedrest, you’ll get to go home and serve another 7 weeks of bedrest. But at the end of the day, you’ll get a second baby who is perfect.

In the end, you’ll end up with a daughter and a son. They are perfect in every way.

Andrea, your marriage is still intact and strong. Hopefully the shit show the past 7 years will become a distant memory very soon…..

xoxo.
Me