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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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.  

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.