Rainbows, Unicorns, and Butterflies - J/K

My mother-in-law once told me her 50's were her favorite.  I should have had a clue when on the morning of my 50th birthday, my previous German Shepherd, Sarge, had the worst case of diarrhea I'd ever seen.  In the house!  With people coming over for a meal.  I'm sure glad we can't see the future.  It's not always bright.  I won't say my fifties have been my least favorite, because of my grandkids, but they have been the hardest and most painful years of my life.

Six years later, and we've lost our son John to the opioid epidemic, my Dad and I, along with my mother-in-law all hang out at the cancer center, and it definitely has not been butterflies, unicorns, and rainbows.  I have a standing joke with a friend - I type in "uni" on my phone and this comes up:  🦋🦄🌈.  It reminds me that while life is not all butterflies, unicorns, and rainbows, people prefer it when it is.  We have a natural human instinct to look for the good, to try and make it sound better, to give a sort of "it could be worse" response if you will.  I'm told so often that people appreciate my transparency and realness.  However, you'd be surprised, or maybe some of you wouldn't, at the number of comments that are from "fixers".   Well, it's only for a while, it'll grow back, it's only hair, he's in a better place, it's stage one, after all, give grace!  So rather than being real, I shut up and default to a photo of the grandkids.  It's happy and I don't get those "fixer" comments.  But, that goes against everything I've tried to do in my writing - so if you're a fixer, you might want to stop here.

Because here is a whole lot of transparency for you.  Cancer sucks.  I'm tired of being surrounded by it.  I have been since 1987 when my mom was diagnosed the first time.  She had breast cancer three times.  I watched each time as she underwent the different courses of treatment.  Radiation, three surgeries, chemos, etc.  My sister had lung cancer that metastasized from her lung to her brain. Many surgeries, lots of treatment.  I fixed her hair for her the day of her son's wedding.  Trying to straighten it while it was falling out.  Halfway through the day, she donned a hat and by evening there wasn't much left.  

My dad has been on chemo for 3.5 years.  When I could, I went with him and sat with him each time.  We can't do that anymore.  We sit there alone due to CoVid. I barely remember living my life without someone in it having cancer.  Even three of my closest friends have been through it, and countless others not as close, but so painful for their families to watch.

So sometimes I get cranky.  Even though I'm "only Stage One" - I still have the exact same treatment as someone who is further along.  I still got the AC treatment, with the Red Devil.  I still get 12 weeks of Taxol with some Perjeta and Herceptin sprinkled in.  I still have a port that they stick this needle in every week:

I have cancer in both breasts and it's different in both.  I'm triple negative on one side and HER2 positive on the other.   I will have a bilateral (double)  mastectomy, and no that is not the same as breast augmentation or a "boob job".  I will have all my breast tissue scraped out, leaving the breasts with no feeling.  They aren't enhancing what I already have - they are taking out every ounce of tissue and replacing it with expanders wrapped in cadaver flesh for a few months, and then I'll have implants placed.  I'm thankful that I'm a candidate for skin saving/nipple saving surgery, with a scar just under the breasts, but again, they won't have any feeling as all the nerves will be gone, along with my flesh.  Possibly they can harvest some fat cells to try and make them look more natural, but they will be anything from natural.  Implants come with risks as well - autoimmune disorders, rupture, etc.  I've seen the photos, and rarely do the women look better after.  But when you are trying to save your life . . . it hardly matters.  But it still sucks.

My Grandpa died of cancer, my grandma had a mastectomy, my uncle died of cancer, my aunt died of cancer, my sister and my mom died of the side effects their treatment left them with.  I have the BRCA 1 cancer gene.  This means my daughter and my grandkids are at risk.

I've watched my mom's hair fall out, my sister's hair fall out, my dad's hair fall out, along with eyelashes and eyebrows.  Is it a big deal?  You're damn right it is. Because in this case, you aren't losing your hair because of natural causes, you have cancer - you are dealing with toxic, poisonous drugs on a weekly or bi-weekly basis that is wreaking havoc in your body and is killing off all those cells, good or bad.  When I look in the mirror, I don't just see a bald head.  I see everything that makes me feminine being lost.  The hair, the breasts, the ovaries, the fallopian tubes . . .in this case, the bald head screams "cancer".  And you know what?  While I've taken the diagnosis well, the treatment very well . . I still don't like that look you get when people see the bald head or the hat.  The look in their eyes reminds me of the look that I got so often after John died. The "oh, that's right" look.  The "I don't know what to say look".  The pitying look or the turning away.  And while mine should grow back, no one likes losing their hair, for ANY reason!  And if yours is gone permanently, I'm so sorry!

So, just wear a wig.  Well, guess what.  Wigs are uncomfortable.  They give me a headache.  It's not "me" when I look in the mirror, they move around . . .and I feel like I wear them to make other people feel more comfortable because I surely am not comfortable.  Hats are okay for a while, but I've never really worn hats, and now that the weather is changing the stocking hat gets a bit warm!  The baseball hat is fine, but it certainly doesn't cover your head or hide the bald, and who wants to walk around in a floppy hat?  Perfect for the beach, but we don't live in the south.  If I looked like that girl from Hillsong, that would be one thing, but my bald is not cute.  So, is it so bad that I'm wanting and wishing for an inch of hair?  A simple inch, so I feel like I can go hatless and maybe just look like I enjoy super short hair?  I don't think so.  

So CoVid isn't all bad - you can hide behind the mask and isolate until the cows come home and no one thinks twice about it.  

When I've tried to explain this to people who haven't walked this path, it reminds me of grief.  Yes, I understand that they don't know what to say.  I don't either.  But don't try to make it better by reminding me that my hair will grow back.  I'm well aware.  It's not even about the hair - it's about the whole thing.  All of it.  My hair is just the thing I don't see when I look in the mirror and the reflection reminds me of Voldemort.  It reminds me of all the suffering and all of the people.  It reminds me of who is no longer here with me.  It reminds me of pain and loss.  It reminds me of how sad my husband is because he can't fix it.  It reminds me of how fearful my daughter is for her daughter.  It reminds me that my dad, sans a miracle, will lose his life to cancer.  It reminds me that we live in a broken world and that sometimes, it just feels like a lot.

So, in the midst of sickness and grief, all I can say to conclude this is what I've said before.  Don't speak into something you've not personally walked.  If you must comment, I'd stick to:  I'm so sorry you have to walk this journey, or so sorry for your pain, or so sorry for your loss.  Because if we could fix it, we would. But some things cannot be fixed.  Not on this side.  In Heaven we won't have these "light and momentary troubles", but in this broken world, we do. Loss is everywhere these days and cancer and disease seem to be skyrocketing.  I'm living in the fact that I am but a stranger here and my real home is heaven.  I try not to complain about how I feel and am mostly upbeat about my treatment and care - but some days I feel down.  I miss John and normalcy.  So please, if I feel like sharing the hard stuff once in a while, maybe you can have some grace. 😉 Because some days, I'm all out.

To the ladies reading this who are faced with weeks and weeks of chemo, let me offer you some hope.  I haven't thrown up once.  I get a little tired sometimes but never debilitating.  I have some side effects but they are manageable.  No person is the same, and I just want to encourage you not to expect the worst, but to see how your body handles it.  I was fortunate to have someone walk the path just before me who only ever said she was tired sometimes.  It really helped me.  I'm so sorry that you have to go through this.

Thanks to those of you who have stood by our side despite our seemingly troubled life.  Even though I don't reach out a lot, I'm very thankful for your presence. I'm not looking for advice, sympathy, or to be told I'm "beautiful", or to be pitied - I am documenting this journey as real as I can, for those it may someday speak to or hopefully help to feel not so alone in their journey of loss or of cancer.  And, because it's okay to be honest when life sucks, it doesn't make you less righteous than Ms. #Blessed over on the other side of the fence where the grass is always green.  It makes you human.   ❤️