Sunday, May 13th, 2018, is Mother’s Day, so I’d like to tell you about an Epiphany I had today, concerning my Mom.
The things I’m going to talk about may seem quite shocking & difficult to read & digest (no gore, I promise), but I’ve also promised that I will be sharing everything, and that I won’t be sugar-coating anything, nor will I be pulling any punches, either.
I’ve also stated my purpose of being educational, so fasten your seatbelt and read on.
This revelation is very important to you & those you love, care for, or know, who will end up having cancer at some point in their lives. One in eight women will; you do the math.
You already have a reason to be here reading this, so pay attention and learn.
This will help you be a better loved one, family member, friend, caretaker, co-worker, and empathetic human being.
It could very well help you as a patient , should you ever find yourself on this unspeakable journey yourself. Trust me!! Here we go…
I was reading through my journal, posts, comments, & notes to see where to go & how to start the next segment for this Blog.
I found a reference to my Mom & her journey with Breast Cancer when she was 50 years old, much younger than I was when I was diagnosed 20 long months ago at the age of 68. In my comment, I mentioned, rather blithely, I now see, that her “journey” was two years (because that’s how long she was on chemo).
I teared up when that sentence slapped me upside my brain; that’s exactly how it felt!
Her journey lasted two years???
Oh, how very ignorant was that (in the true sense of the word)!!
And insensitive, too, but most assuredly unintentional!
I uttered that sentence not that many months ago, while still in the throes of my own journey’s beginnings.
Let me explain why that was so off-track. I truly did not understand at all. Here’s what I know now…
Cancer victims & Survivors almost always refer to their diagnosis, treatment, recovery, & recuperation as their journeys. Why? Simply because that’s what it is. No other word adequately describes it.
What someone who has never had cancer can’t possibly understand/comprehend, at the core/soul level, is that the journey may have a beginning, but there really never is an ending. This I’ve been learning, slowly but surely.
Once you have cancer, you are on this journey till the day you die, no matter how short or long a time that takes, even after you are cured, have no evidence of disease, are in remission, or whatever.
Don’t let this article scare you! It’s just a short dissertation of facts that occur over time, but sound so much worse bunched up in one article. You get through them, one step at a time.
A Note of Advice:
If at all possible, every patient should have a loved one or companion with them for every Dr visit, test, procedure, & of course, surgery! Someone to take notes, ask questions, comprehend, & comfort. It helps more than you can imagine. If it’s in your power, don’t ever let anyone go on any appointment alone, including yourself!
The patient will be nervous, anxious, & scared. Reassure her that it will be okay.
It’s okay to feel those feelings.
Take a deep breath.
Picture your happy place.
The feelings are temporary; allow yourself to feel them, & roll right on through them.
Put on your courage hat, & plow right on through them!
(I know. That was redundant, but I think necessary.)
First you have a diagnosis, then rounds of diagnostic tests & blood studies. You are poked, prodded, stuck with needles, & maybe even have dye injected into your bloodstream while you are lying in a huge machine. (Yeah. That was fun!! 🙄)
You have rounds of Doctor appointments. You’ll go from your primary care physician or GYN to a radiologist, who will refer you to a breast surgeon, who will refer you to a reconstructive plastic surgeon, and then an anesthesiologist. There may be more visits with the radiologist. At some point, you will see an oncologist. You may need to see a specialist for genetic testing & counseling.
This stage is a whirlwind, framed in a reference of shock, as each thing hits you while you may still be reeling from the last thing that hit you. It feels very surreal while the puzzle pieces are falling in place, seemingly so rapidly. Hang in there! It’s a rough & bumpy ride, but you just do it, one step at a time. Breathe! Cry when you need to, then wipe your eyes, blow your nose, take a drink of water, & then take that deep breath & the next step. Repeat as often as necessary, one at a time.
All of your regular, pre-cancer care will be affected by your cancer treatments. You may need to postpone other issues & appointments until the cancer treatments are completed or under a certain amount of control. Dental care can become an issue, at times.
You may have surgery, more often than not, multiple times. You may need chemotherapy and/or radiation treatments. Your immune system will be suppressed & compromised, so you’ll have to be very careful, as will your caregivers, to make sure you’re not exposed to anyone with an active communicable illness. You may have to have infusion therapy.
If you have chemotherapy, you will, most likely, lose your hair. Be prepared. Hair is hair. (& It does grow back; this, too, is only temporary.)
Chemo does not cherry-pick or discriminate. This means all hair – head & body, including eyebrows & eyelashes, leg hair, & all other hair, from what I’ve read. (I did not have to have chemo or radiation, thank God, so I don’t know this first-hand; it is what other survivors report.)
You may not be physically able, for awhile, to hold your beloved children or grandchildren, due to pain, meds, drainage tubes, & limited range of motion and/or strength. This hurts more than anything else, in my experience!
Also, be careful to not let your pets jump up on you unexpectedly! It happens. It’ll hurt! But they just want to love & comfort you. You just need to be vigilant, careful, & teach them to be gentle. Have your caretaker/s monitor them & keep them from hurting you.
There are usually side effects to endure, even if you end up only having to take a hormone suppressant pill. Whenever you experience them, record them & tell the Dr who prescribed that medication. If the reactions are severe or unbearable, call the Dr immediately or get to the Emergency Department. They can work with you to get you on the correct medication for you.
While you are undergoing usually multiple surgeries and other treatments, your cancer care & treatments will dictate your strength, sleep, eating, bathroom habits, and comfort (or lack thereof).
You may need Physical Therapy; many do, & say it helped their healing greatly.
Many also need counseling to help them understand and deal with everything. There’s no shame in that! I recommend it. Personally, I’m only just recently thinking I may want to add this to my treatment plan for awhile, just to round out the edges, emotionally, because I’m still having issues with anemia, strength, stamina, & the stress of the trauma to my poor old body.
Some people suffer PTS, Post Traumatic Stress (they no longer use the word Disorder, as it is not). It is a psychological effect of almost unbearable trauma. Should you find yourself suffering in any way you may think is PTS, please bring it up & get treatment for it!
One day the chaos will cease, or at least slow down, and you’ll be finding your “new normal.” The old you, at least in part, will no longer exist.
Physically, you are forever changed, but understanding/comprehending the impact of that, from the outside, is truly not possible. Neither is it for you yet; that takes time.
You will have scars – physical, mental, emotional, and spiritual. The physical scars (& sometimes, unfortunately, deformities) may not be visible to the outside world, as with breast cancer. Other cancers may not be so visible either, outwardly.
In almost all cases, though, where chemotherapy is involved, there will be the visible “badge of courage” – the bald head, scarves, hats, & wigs. Most patients are very sensitive about this. Some don’t mind, but most do not like off-hand comments & questions regarding this, so try to refrain from doing that. Maybe just saying “your scarf/hat is lovely!” would be nice, but the ladies who wear wigs are quite sensitive & are trying hard to camouflage & look more normal. Just don’t. Same for the bald head – they don’t like off-the-cuff comments about “why’d you shave it?” etc. They feel one of two things, as a rule, from what I’ve seen & heard – either that should be obvious, or it’s really none of your concern. The same is true when their hair is slowly growing back in. Even well-meaning attempts at humor about it often fall flat, so don’t chance it. Inside, they’ll most likely be thinking “like I had a choice! How is that funny to you?” So just don’t.
After all that, you’re declared “A Survivor” and life begins to move forward. You will still be you, but different, too. New & improved. Stronger. More aware of how much you have conquered. More bold, but with less patience & maybe a short fuse (but that’s usually temporary, too).
If you are a person of Faith, you may find, as do many, that your Spiritual journey will be strengthened greatly. Mine was strong to begin with, and it is what got me through this as well as I did, even before the diagnosis. God is so Good!!
I pray for the same experience for you!
And then you’ll have your 3-month, 6-months, & then yearly, check-ups, tests, scans, etc. And so it continues.
The fear of recurrence sneaks up on you. Any pains or other symptoms you don’t expect or understand will send you to the phone to call your Dr or to the Emergency Department. Usually, it’s nothing serious, just scar tissue , maybe, or an undissolved stitch working its way out. You just can’t take chances, though. You have to call, ask, &/or be seen; you just can’t chance it. They encourage you to do so. They’d rather check you, explain it, make sure there’s no problems, & comfort you than have you take chances & miss something that needs attention! So Do It!!
Hence, the journey never really ends. You don’t think about it all the time though, as time moves on, I’m told.
Please, Dear God!!
Back to my Mom, and my Epiphany/Revelation…
Mom recovered from the breast cancer. She beat the beast!! It wasn’t easy, but she developed a great attitude about it. I know for a fact that her Faith was strengthened, too. She lived 27 more years, & died in March 2009 from lung cancer, unrelated to the previous breast cancer.
I did not understand all of this until I had to face it myself, and only today, really – 20 months along on my own journey. It’s a journey you learn about, step-by-step, day-by-day, as you live through it. The deep understandings of it all come with time & personal experience. No way around it.
This is why the Epiphany hit me so hard. I finally realized TODAY that her journey did not end after the two years of chemo; it did not end until the day she died. I didn’t even realize I had previously not understood it! She experienced the effects of that breast cancer & its treatments each & every day of her life from the moment of her diagnosis.
I’m so sorry, Mom!!
I truly did not know.
How could I???
Happy Heavenly Mother’s Day, Mom!! I love & miss you!!
P.S. to my readers:
If you do not currently have a personal relationship with your Heavenly Father & His Son, Jesus Christ, please reach out to someone who does, & let them guide you in that most important Journey in life!
May God Bless you greatly!!