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.

Advertisements

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad. I had been told that the  permanent remission rate for aggressively treated APL was upwards of %90.  I’d be fine.  My standard reply to many of the reactions to my having cancer was “this is the least of my problems; they can fix this”, and to some degree that is still true. But overall, I considered myself very fortunate.  There was a treatment that could really fix me. Not everyone with cancer is that fortunate.

I’ve been off of chemo for about 1.5 years (after 19 months of constant IV or oral chemotherapy, including 50 doses of arsenic IV… 2 25-dose cycles when I’d be in the hospital on a cardiac monitor during the infusion and then go home).  Chemo itself took a toll on my body and the other disorders I’ve got (diabetes- my blood sugars were absolutely nuts on chemo- much higher than usual; fibromyalgia- chemo has side effects involving muscle pain; dysautonomia- my heat intolerance got worse, and my heart rate and blood pressure have been more irritable).  I’ve had ‘chemo brain’ where I’m foggy sometimes, have trouble finding the right words to express myself when I’m speaking, and some memory issues.  Some of that has stuck around, and I’m not sure if it will improve. The blood sugar situation is getting much better, but the dysautonomia is still not good. My memory and word-finding are still not quite right.  But I’m alive. That’s good enough.  I can figure out how to deal with the rest.

I hadn’t expected the ongoing low grade anxiety about relapse and potential metastasis (yes, leukemia can spread).  A few months after stopping all chemo pills, I was scheduled for my annual girly exam. During that, my test to check for blood in my BM came back ‘somewhat’ positive, so I had to have a colonoscopy and upper endoscopy to check for any problems there.  While they were at it, they snatched me up for a mammogram (I’ve never been good at going in for those with any regularity), and because of worsening headaches, I ended up with an MRI of my head.  I also had a weird skin lesion that I needed to get biopsied, and had my first full body skin check by a dermatologist.  A lot of me was scoped, scanned, scraped, or squashed.  Fortunately, everything came out OK.  That was a huge relief.  I have never been all that paranoid about my health (I’m to the point of not reacting much to another diagnosis- I’ve had so many of them), but after a cancer diagnosis, things are different.  It has its own life, even when it’s not there.

I’m learning to relax a little bit, but I won’t ever feel like I’m really ‘safe’.  It’s coming up on three years since the oncologist told me I had leukemia. Had I not gone in for my annual diabetic lab work, I never would have known that my CBC (complete blood count) was absolutely trashed. It took two weeks to get in to see an oncologist, and he scheduled my bone marrow biopsy for a week after that; APL is generally fatal within a month of onset if not treated… and I was sort of put off, even though my lab work had been sent to the consulting oncologist.  As it was, I went to the ER with some shortness of breath the weekend before the scheduled bone marrow biopsy; with a history of  severe blood clots in my lungs, I’ve been instructed to always have anything ‘odd’ in my chest checked out immediately. Had I not gone to the ER,  I would have been another statistic of those who are diagnosed on autopsy, or literally days before death (I know of two people who had that happen last autumn…a 29 year old anchorwoman for the local NBC station, and an 11 year old kid; both were gone within 2 days of being diagnosed).  I’m lucky, and I do realize that.  And, I also know that early detection is the key to the best outcome… so I’m a bit on guard.

I also hadn’t realized how aggressive APL is when it’s not treated until the death of the local news anchor.  I was stunned that I was alive, and she had died just 2 days after she’d been diagnosed.  That was a mind-blower.  I had sort of coasted through chemo and not asked a lot of questions about how bad things were. Looking back, and knowing what my blood counts had dropped to (I got daily updated counts on a card in the hospital to keep track of things), and the purpura (little purple dots of bleeding under the skin), I now realize how ‘in trouble’ I was.   I now realize why there was a sense of urgency during those first days in the hospital (I was there for 6 weeks after going to the ER for the shortness of breath).  I understand why the ear infection was such a big deal, and why it was monitored so closely when it started to spread into my neck, and I had a  moderately high fever but very few white blood cells to fight infections. I was put on vancomycin and gentamycin for five weeks... That’s a long time for any antibiotic, and those two are heavy hitters.

So maybe I’ve gotten a little scared.  I might be a bit late in finally getting spooked, but it is what it is.  At the time, I was more focused on just getting through it.  Now, I’ve got the luxury of having things being stable enough (for my normal abnormal  self) to look at what had gone on.   I hope and pray that I’m in that %90+ that will never have a relapse.  I’ve learned to appreciate life a lot more, and not sweat the small stuff… and what is considered ‘small’ has been redefined many times.  As long as I can get through something, it’s not worth the energy to freak out over. The unknown is another matter.  And I have absolutely no control over that.

I know that I’ve survived all of the stuff that has gone on in my life for some reason. I’m not sure I understand what that purpose is yet- but I’m working on it.  I see a fairly long future, even with the assorted medical issues I’ve got going on.  It’s not like I’m spending my days thinking I’ve got the cancer back again.  But, I do wonder about the life my cancer had…is it gone for good, or is it dormant and waiting to come back?  Some may see that as fatalistic.  For me, it’s just life after aggressive leukemia and the many months of chemotherapy.   I’ve heard others who have had all sorts of cancers have the same feelings of ‘what next?’… it helps that I’m not alone with that.