I’m SO Sick of Pink Cancer Ribbons… Hear Me Out, Please !!

We’re all pretty well aware of cancer.  The pink ribbons are really marketing tools- and that’s fine.  But it really chaps my hide to see the pink ones so prominently.  Like it’s the “most important” cancer… what about prostate, lung, thyroid, pancreatic, liver, bone, colon, testicular, brain, pediatric, blood, skin, and other cancers?  Any cell in the body can become cancerous.   We need PLAID ribbons.  (The rainbow has been taken).  Let everybody have equal showing in the cancer awareness campaigns.  I’d wear a ribbon that represented all cancer struggles.

I don’t have anything “against” breast cancer (my mom had bilateral mastectomies, along with lung and brain metastasis).  But what about all of the other folks out there?  Just last year, my cousin Kathy died after a 10 month hellish fight with neuroendocrine colon cancer, my dad’s friend Marilyn died after a 9 month horrible battle with ovarian cancer, and my uncle Lee died from esophageal cancer just weeks after diagnosis.  In the past, my biological father (Phil) died from brain cancer (metastasized from his kidney, dead at age 49; we never met because of cancer), a cousin’s wife (Pat) had kidney cancer that went to her liver (was also in her bladder), my dad  (adoptive guy I grew up with from the time I was 10 days old) had thyroid cancer 3 years ago, two cousins’ wives had blood cancers , I’ve had leukemia, another cousin’s husband  had prostate cancer, another aunt with breast cancer,  another one who had to deal with knowing she had genetic predisposition to breast cancer,  and there are many other relatives that I’m forgetting (or can’t remember the actual site) that matter.   Then there are the friends – several with stage 4 cancers (lung, colon, and colon going to lung and liver) who are still fighting or have done well .  And some who lost that fight.  They all deserve to be recognized for their battles.  I’m just one person who knows this many people who have or had cancer.  I’m not naming the ones who are still alive.

I have been an RN for 30 years.  While I’m disabled now, I took care of a LOT of cancer patients (mostly on a surgical floor- and we also did ‘end of life’ palliative care; we couldn’t fix them, just ease their last weeks and days).  Four stand out.  One was a Holocaust survivor with terminal colon cancer (the sweetest lady, who had more than her share of hell on earth).  Then there was the 40 year old construction worker who had just had a melanoma removed (still had sutures) when he started having headaches.  After 3 trips to the ER, they did a CT scan of his brain, and found multiple sites. He was admitted (I was the admitting nurse), and found that he had lung, bone, and liver metastasis as well…. he lived for a month. I pronounced him dead and watched the funeral home take him away.  There was the lady who had just had a baby and was having trouble breast feeding; ends up that stage 4 breast cancer was blocking her milk ducts.  She’d never see that baby grow up.  There was the lady with pancreatic cancer, who was ‘Big Bird yellow’ and looked like someone had strapped a basketball to her belly because of fluid accumulation; she had a miserable last few weeks.  There were dozens, if not hundreds, besides those four that I took care of (mostly as a charge nurse- so not direct care in some cases).   When I worked neuro, as a direct bedside care nurse, there were a LOT of brain tumor patients.  The malignant ones never ended well.  Glioblastoma multiformae (GBM) – stage 4 = grim prognosis.  The tumor has ‘tendrils’ that bore into the surrounding brain tissue to never be fully removable.  Though stage 4 in some sites is more and more treatable- much more than when I was still working- it is still generally felt that stage 4 means that is what the person will die from.  But there are never any accurate timelines; more people are living longer WITH  stage 4 cancer than ever before.

Then there are  the two little relatives of a friend of mine, just a couple of years ago-Cole and Sadie (nephew and niece) – diagnosed within weeks of each other, who both died… an 11 year old and 8 year old.  One had the same type of leukemia I had, and went to the ER on the Sunday after Thanksgiving, not feeling well since the day before; he went into a coma on the helicopter transport to a larger hospital, and was gone the next morning.  Never saw it coming.  No symptoms that were red flags.   The 8 year old survived less than a year after a diagnosis of  GBM Stage 4… St. Jude’s did what they could… but glios are notoriously tough to treat.  Then there were the kids when I was a kid- one who had brain cancer when I was in 3rd grade (he was in 4th grade- his name was Mark), a friend’s 8 year old ‘big’  brother (I was in first grade when he died- I still remember hearing about him dying.  His name was Thor.)…  Facebook is full of kids with cancer.  I can’t handle that type of grief, even if I don’t know them… what their families and friends go through is just heartbreaking.  I’ve heard parents make that guttural, primal  scream of that ultimate loss when I worked pediatrics (our PICU was connected by a narrow hall, and those sounds travelled).  The pain they feel is palpable.

I had acute promyelocytic leukemia- the most lethal leukemia if not treated (many folks diagnosed at autopsy after some type of ‘bleed’ or hemorrhage ), and the best outcome if treated- per  my oncologist.  The average survival without treatment after onset is ONE month.   I was very lucky (or more like God was looking out for me).  I had no specific symptoms- I’m disabled with a bunch of diagnoses, so I never feel “good”.  I just happened to get my annual lab work for my diabetes, and it showed a BAD ‘complete blood count’ (CBC).  Like really bad.  It took 2 weeks to get an appointment with the oncologist, and he scheduled a bone marrow biopsy for the next week.  That was 3 1/2 weeks of my month ( I didn’t know that then).  The weekend before that, I felt bad. I went to the ER, and stayed for 6 weeks, starting induction chemo.  I then had 50 dose (2 25-dose cycles of Monday-Friday for 5 weeks x 2 cycles) of ARSENIC (Trisenox- look it up 😉 ).  Then another year of maintenance chemo.  My body has never been the same.  No eyebrows or eyelashes aren’t that big of a deal- but the increasing neuropathy and weird weight gain has been rough.

So, I’m not cold or indifferent to cancer.   I’m just tired of the boobs getting the press above the others.  This month, the NFL will have their players in pink shoes and other accessories (they look ridiculous).  Go figure… the boobs win out as to who gets their public support.   It’s kind of a kick in the face for those with other cancer struggles, wins, and losses.  They are ALL important.  All of the survivors and lost fighters are important.  They all deserve some undeniable recognition.  If someone sees an orange ribbon (leukemia) or yellow ribbon (pediatric cancer), do they know what those are for?   So, I suggest plaid.  Get everybody in there.  Weave them all together, since so many cancers spread.  Maybe finish them with the color of the cancer a specific person has.  But acknowledge them all.  They all matter.  Nobody struggles more than anyone else.  Everybody needs funding for research.

I will very rarely ‘share’ Facebook posts about any cancer.   I feel for those struggling with it, and for those who have lost family and friends to cancer.  It’s not because I don’t care.  It’s because I’m sick of SO many being affected.  And only the pink ribbons being ‘iconic’. Everybody with cancer matters, and deserves to have money funded into research for their type of cancer… not just the boobs.

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If I Could…

...I would fix everything, and walk you back to your normal life.  I would take the pain and nausea and put it in a box,  and throw them  into a volcano, permanently removed.  I’d take the fear and confusion, and surround you with nothing but gentle hugs, a warm blanket, and a feeling of safety.  I’d take the frustration and slap it upside the head, and then help you find something to make it all right.  I’d look for something silly to show you how you can still smile, and how you really are still you in the middle of all of the chaos. (You really do have a great smile and laugh).   I’d take away that feeling like you’re dying, and remind you that this is all temporary, and that you are the best candidate to survive all of this.  Cancer doesn’t define you; it shows how strong you are.  And you really are.  But you are not cancer.  You are so much more.

If I could, I’d figure out some way for you to know what is and isn’t normal in an abnormal situation you’ve never been exposed to.  I’d give you all of the information you need to understand what is happening (that I know of), so you know that you have  a solid chance at beating this.  You’re strong, and you dwell in the positive when you’re you, in your normal life.  I wonder if some of the pain is the grief of the life you’ve had to set aside for a while.  I wonder if anybody has sat down and taken your hand and told you that it’s more than OK to feel that this level of vulnerability is terrifying, and affirm that  it’s not going to last forever.  And being terrified, and grieving isn’t going to change who you are. It will create another depth of character you didn’t know you had.  I wish you never had to deal with all of this- but you will come out stronger.

I’d look you square in the face, and tell you that the drowsy feeling with pain meds is normal, and often gets better as your body adjusts to both the pain relief and the medication in your system.  I’d let you know that you’re not going crazy. But I understand how it can feel that way (people who are truly going nuts don’t worry about it  🙂 ). Any bonafide goofy person I worked with  wasn’t concerned in the least.

If I could, I’d stand on my head if I thought it would make you well (and if you can get a visual of me on my head, well…. that should be worth a giggle. I’d probably pass out half way up, and then what?  A  ‘fluffy’ middle aged door stop).  But I’d do it if it meant you’d feel better ❤

You have an amazing support system with your friends/coworkers/family.  It awes me that one person has so many people around for support.   They will help you heal as I’m sure they already have.  Just one more minute of pain, just one more hour of uncertainty, just one more day of STILL being here and fighting this beast that has turned your world upside-down.  Take it in small increments. You’re stronger than a beast who was only brave enough to go in the back door !  You have a life that is waiting for you to get through this.  And that will happen. I wish I could make the journey easier, and speed up the process, but one thing about cancer- you want the treatment that gives you the best longterm odds.  Keep thinking about how mad the beast must be !  😀

You are already a survivor, did you know that?  Seriously, they consider anybody who gets diagnosed to be a survivor- unless you die of shock when you get the diagnosis and fall over stone-cold on the floor.  But you got through that  and stayed conscious !  So, you are surviving.  There’s some work to do on the ‘thriving’ end of things, but you can’t get there all at once.  Chemo is a direct assault on your entire body just to kill the beast.  And, from what I hear, it’s helping. 🙂   You. Are. Winning.

Feeling like you’re never going to get through this is pretty normal.  There is nothing like chemo that I can think of in 30 years of nursing that compares. ( nursing school -2 yrs , working as an RN -20 yrs , and the last 8+ as a patient on disability -I still keep my license to keep my own butt going).  I’ve had a lot of medical stuff, over decades.  And chemo is the hands-down winner for “WTH just happened to me?”.  😮   There are no clear ways to explain how it’s going to feel (and it’s different for everyone).  But,’ lousy’ would be a vast improvement much of the time.  And you can get through this.  Your body can handle this treatment.  You will feel better.

In the meantime, look out of the window (or find one that has a view), and just look at  the trees and birds, the clouds and sky, the people walking around, and the ones taking care of you.  Watch something goofy on TV (I lived on ‘Funniest Home Videos during the first 6 weeks of being in isolation for the leukemia- and I’m sure the nurses thought I was a bit ‘touched’ when howls of laughter would come out of my room).  Find things that make you happy in the moment.  No need to be elaborate- just what makes you happy right. This. Second.  Tomorrow will take care of itself.  Yesterday is gone (though those were some great GF almond cookies Carol made last Christmas Eve !!).

Take a deep breath- and remember you’re still here right now.  And you’ll have the last laugh in the end.  But until then, feel free to cry, grieve, be depressed, miss being at work (that was a really hard one when I ended up on disability- it’s not like retiring when you PLAN on not working, but it’s like it’s TAKEN from you by some rude disease), laugh at silly stuff, and  deal with whatever else is going on.  There are no wrong ways to do this- other than to just get through it.  And it’s all temporary.   Overwhelming, but temporary.

You can do this, dear cousin.  I’m in your corner %110.   And I know there are so many who are there in person and spirit that wish nothing but the best for you. You are loved.  ❤

What If It’s Bad News?

My dad turned 80 years old a few months ago. He’s active, takes care of himself, has a lot of friends, and has never really had to handle serious medical problems of his own. He saw my mom through four cancer surgeries, radiation, chemotherapy, dementia from radiation, and many other surgeries and hospitalizations. He’s seen my disabilities and inability to work as an RN over the last few years.

He’s got an amazing social life, and solid church community that is a big part of his circle of friends.  He goes out walking nearly every day, whether at the mall or a nearby walking path.  Most nights he has something to do and somewhere to go.  He drives all over the place, and is safe driving.  His mind is intact, and he enjoys so many things.

Last week he had a biopsy done on a mass on his neck.  It’s a good sized mass for being on his neck- about 2.5 x 1 x 1.5 inches (not centimeters).   I’ve felt it, and it’s substantial.  Any neck mass can become very complicated because of all of the other structures in that area- windpipe, esophagus, arteries, veins, muscles, nerves… it’s a crowded area for an abnormal mass.  This isn’t really on his thyroid.  It’s more ‘vertical’, and along the trachea- but a bit over to the right.

Today at church his doctor said that there were ‘suspicious cells’ in the biopsy report.  If the test had been ‘OK’, he would have said so.  There is only so much he could say in the middle of the church lobby; to me that isn’t good.  I have no idea what sort of cells they found- and it is possible that whatever is there is very treatable, and not life-threatening.  ‘Suspicious’ doesn’t necessarily mean cancer- but it could.  I’m the sort that thinks about the worst case scenario, and then is pleasantly relieved when it’s good (or better) news.  So my mind is going all over the place.  I’ve seen too much since 1985 when I became an RN.

Mostly, I’m scared for my dad.  IF it turns out to be cancer, there will be decisions about how much to treat it. Tomorrow, Dad is expecting a call from his doctor’s office about a referral to a surgeon; the mass has to go. That has been decided.  After that, I worry about chemotherapy (I finished 19 months of chemo for leukemia a bit over a year ago).  It’s brutal, and not meant for someone with an active life who has never been sick to any extent in 80 years.  I think about radiation- and the  possible side effects. My mom ended up with dementia after radiation to her brain for cancer. Granted the neck isn’t the brain…but I can’t help but think about it.

I’m afraid I won’t be enough help because of my own limitations.  I drove myself to all of my own chemotherapy appointments (more than 50 of them for the IV infusions), but I’m not sure Dad will want to go alone.  I’ll figure it out, with the medical equipment/supplies I’d need.  We’ll get through it.  I just want to do enough.  I want him to know I support him.  I want him not to be any more afraid than he ‘has’ to be.

As a nurse since 1985, I’ve seen a lot.  I know what can happen with neck surgeries, and also what happens when people just want to try anything and everything ‘in case’ something works. I ‘get it’.  It’s human nature to want to live. I’ve seen so many slow deaths from cancer. If this is cancer, there will be a lot of decisions he has to make.  I don’t want him to have to deal with any of that.  I want this to be some cut and dry ‘surgical fix’, and not months of being tied to chemo and/or radiation appointments.  I’ll be supportive of whatever he decides; I just hope that he finds quality in the rest of his life and that this is a temporary bump in the road.  He’s been so active and healthy; something prolonged would be very hard for him.

Tomorrow he will know more, and I’ve asked that the doctor’s office also call me, so I can hear from them what is going on.  I’ve never asked him to have them call me before.  But I’ve never had him tell me that the doctor said he had ‘suspicious cells’ in an abnormal mass.  It’s my dad.  My mom is gone, and he has been my rock.  We talk daily to make sure the other is ‘ok’.  When I’ve been in the hospital, he’s the only one I’ve had to make sure my dog is OK (and that is a huge relief when I’m holed up).  Hopefully, I’m just being an overly worried nurse who knows what ‘suspicious cells’ can mean.  Hopefully, the surgery will be simple and fix a benign problem.   Hopefully, my Dad won’t have to make decisions about quality vs. quantity of life.  Hopefully, I’ll be able to be ‘enough’ help and support for him.  Hopefully, it’s not ‘worse’ bad news. ❤

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.