Answering “Search Engine” Questions…

When I look at my site stats, I see the search engine topics that people are using to find information…. I’m using this post to answer some of those questions, in hopes of helping folks a bit ❤  I will edit at times to add more information as I see new topics.

Today, I saw a search for leg pain and leukemia M-3….  I do remember leg pain, with the chemo.  Several of the medications used had musculoskeletal pain as a side effect. ATRA and I think arsenic can cause pain.  I had more pain as the year of maintenance went on- I was on ATRA, methotrexate, and M6 mercaptopurine at the time.

I also saw a search for diabetes and chemo- my blood sugars went nuts when I was on chemo. They’re just now getting back to some sort of normal range.  It took several months and a trip to a Joslin affiliated endocrinologist for some insulin and metformin adjustments.

I just saw a search for ‘what could have gone wrong in the ER when someone dies from leukemia there’…. well, some leukemias are known for being really bad for causing ‘bleeds’ – sometimes in the brain (can be fatal very quickly), and sometimes in other parts of the body that can be really significant before they’re detected.  Also, leukemia is known for not protecting the body from infection- so someone could have a really bad infection and not be able to fight it- but if they didn’t know they had leukemia, they might not get help until the body couldn’t keep going (septic shock).  Leukemia can show up in ERs for the first time. Sometimes, the only time it shows up is during an autopsy.  😦

As far as people dying from APL in this day and age, yes. It happens. I know of 2 people in the last 6 weeks who died within 2 days of being diagnosed.  Because the blood clotting cells (platelets) are very low with APL when it is diagnosed, there is a huge risk for severe, and possibly fatal hemorrhages in the body or brain.  Those can be lethal very quickly.  APL also causes impaired ability for the body to fight infections. That can also cause death.  I was lucky to be diagnosed in time; some people are diagnosed at their autopsies.  But I was also very sick.  I got infections, and also tiny purple spots all over my legs and abdomen from low platelets. I got 13 platelet transfusions and 12 blood transfusions.   If APL isn’t treated it IS fatal. End of story.  If it is treated, but the disease is too advanced, or infections are too severe, death is a very real possibility. As an RN, I understood what was happening to me, but I was too worn out to really pay much attention…but I was SICK !!

If someone goes to the emergency room with advanced APL, it is VERY possible that the ER didn’t do anything wrong.  The disease was simply too advanced.  If someone goes to the ER because of severe headaches or decreasing level of consciousness (or coma), the brain bleed has already happened.  The ER is NOT the place for APL to be treated. They can identify lab work that indicates the probability of some type of leukemia, but it takes a bone marrow biopsy and specialized testing in specific labs (often not in the actual hospital since it is SO specific) to determine the type of leukemia. But the most an ER can do is identify the probable problem, and send the patient to the proper part of the hospital for complete diagnosis, and specific treatment.

Another search engine term I’ve seen more than once on my site stats involves defining what a ‘frequent flyer’ is in regards to an emergency room.  ERs consider someone to be a frequent flyer if they are in the ER a lot, and often if they are either looking for pain medications OR don’t have a primary doctor of their own. Frequent flyers are not regarded well by ER staff.  Most of the time (not always) the frequent flyers go to the ER for things that aren’t actual emergencies.  Many also visit several local ERs to either get meds or see a physician for something that is really not appropriate to have cared for in an ER.  They waste resources in many cases. They cost a lot of money (many also don’t have insurance).  SOMETIMES, the ER really doesn’t have a clue why someone is in their ER- they make judgements about the person that aren’t true.  But in most cases, frequent flyers are there because they made the decision to go to the ER and seek some sort of ‘care’.

For : ‘If I’ve had leukemia for over 3 years is it too late to fix this?”- it really depends on the type of leukemia- if you’ve had it for that long and hadn’t been diagnosed or treated, it sounds like a slower chronic form (if you have leukemia at all– there are other things that can have similar symptoms)- whether it’s myelocytic or lymphocytic requires specific testing.  It’s not over until it’s over !  See your doctor, and get it checked out 🙂

Whoever is entering ‘two nurses having sex’, ‘nurses sex’, ‘nurse sex’, or other inappropriate terms into the search engines- GET HELP.   It’s repulsive to have some pervert finding my posts.  If you wonder how two nurses have sex, they don’t have any special parts.  If you want some twisted porn site, then go to ‘porn’, and look there. GO AWAY.   Geez- you’re at it every. damn. day.   Get a magazine and go deal with yourself.

How to pronounce the Swedish cheese bondost spelled Bond Ost…. in English, it comes out like this :  Bónd Oost.  The ‘bond’ is more like booned. But not as long with the o’s.  If that makes sense- LOL.  😉

As far as recipes for Swedish sylta- there are some great Swedish recipes if you just enter exactly what you did…. how to make Swedish sylta.  I personally don’t like veal jello 🙂

For the person asking about the schnauzer waking up gasping and breathing heavily- and why dogs hold their heads up to breathe when they have heart failure :  The dogs’ hearts aren’t pumping oxygenated blood effectively, so they gasp to get more air… they hold their heads up because sometimes the heart becomes so enlarged (I saw my dog’s chest x-ray- it’s dramatic) it actually shifts the windpipe, and it’s ‘bent’.   Medications and prescription diets can help- one of my dogs made it 12 GOOD months. My dog who died 10 days ago made it about 9 months or so.

“Roof of my mouth is smoothed out”….. that happened to me when I got the induction chemo for APL (leukemia).  It went back to normal within a month or so after the last day of the induction chemo, and the consolidation and maintenance did not have that effect on my mouth.

A really important search engine term today:  ‘In ‘mission’ (remission) from APL leukemia for a year so won’t relapse’…. YES- you CAN relapse- that is why follow-up care is so important !  You didn’t go through all of that chemo for nothing !!  Keep following up with your oncologist !  You can relapse at any time, though my understanding is that after 5 years of CONTINUOUS remission, you are considered ‘permanent remission’ or cured.

To the bulimic who ‘pucked up blood clots’…. GO TO THE EMERGENCY ROOM.  Your esophagus could be tearing, which is fatal if not treated.  No joke. Get yourself seen by a doctor.  Suck it up, and get some help ❤  It’s scary, but you seriously could be getting ready to blow your esophagus (or stomach) and bleed to death.

OK…. here’s a favorite one (and it’s from today !!)  ‘witch side of the syringe is the cc side’ (sic)…  Here’s a tip. If you don’t know, put the syringe DOWN !!  If you’re in some sort of training to learn to use them, they will tell you.  If you have a legitimate reason for handling syringes, there is someone to ask- and it’s a valid question. But to ask that in a search engine search bar tells me something isn’t quite right, possibly !  🙂

To the person who entered “can you get disability for not being able to wipe your butt?” in the search engine, how about this- with that level of dumb ass you might just qualify.  Disability isn’t a joke. You, however, are.  Do you have any idea what being disabled actually means?  Do you have any human DNA? Or are you just so mentally disturbed that you don’t care?   If the lack of ability for personal hygiene is part of an actual disorder, then maybe…. just maybe you (or whoever) would qualify. Go ask someone who might know your situation, and quit looking up offensive topics.  OR play in traffic – the results of that may land you on disability.

Edit:  I guess I was annoyed that day 😮   Disability still isn’t a joke, and is a demeaning place to end up.  It’s not a career destination.  😦    I miss working every single day.  I miss feeling useful.  I miss having a sense of purpose.  I miss taking care of patients.  And, I even miss the idiots 😉

I Hate Cancer…

Sounds pretty straight forward, but I don’t mean that I just hate cancer in general. I  don’t want to hear about it anymore.  I don’t want to see the photos of  bald kids I don’t know, or some pink ribbon logo plastered everywhere. I’m just so DONE with it.  And yet, I get it.  I know about wanting to support ‘the cause’.  But I really just want it completely out of my life.  Maybe that sounds crass. But it’s how I deal with it… to each our own, right?

But on the flip-side, I have a lot of empathy and compassion for people I know who are dealing with cancer. I want their days to be the best they can be.  I understand what it’s like to be a cancer survivor, and never know if  it’s going to come back or not. I know what it’s like to watch a parent deal with the aftermath of cancer radiation (and multiple surgeries/sites because of cancer), and have her mind destroyed by dementia from that radiation. The cure led to her decline…

I’m not some cold, uncaring jerk.  I just don’t want to hear about the grand general cancer cause.  It’s more personal than that.  Maybe that’s it.  I don’t like it being some token thing to climb on board its bandwagon.  It’s great that people want to advance research. But don’t send me the flyers.

When I was diagnosed with leukemia on March 30, 2010, I wasn’t all that surprised.  I’d seen the blood work that was done as part of my routine diabetic annual exam, and knew it was BAD- like ‘buy-a-shovel-and- hire-an-organist’ sort of bad.  But I was still kind of in shock.  I’ve had enough weird medical stuff go on in the past few years that nothing really cuts my world to pieces, but I was nervous about my recovery.  When my oncologist told me I had the best kind of leukemia in terms of survival rates, I sort of closed my mind to anything but being cured. That was that. Get on with it.

Chemotherapy wasn’t as bad as I thought it was going to be, when I was in the hospital. Yeah, I puked once and was extremely tired.  My hair fell out- except for a few strands in the front (the first time).  Dad called me from my apartment when he was looking in on Mandy (my dog), and asked where some scissors were so he could come and cut the stray hairs off.  I told him the kitchen, and he showed up with poultry shears…not what I had in mind, but it got the job done. Chicken scissors for my hair trimming – oh well; something to laugh about!

The nurse I had the most often during the day had ‘the talk’ about ‘what if’ things didn’t go well. What did I want done. I have advanced directives, and talked to dad and my cousin, Jane.  We were all on the same page.  I’ve had ‘the talk’ with countless numbers of patients and/or their families in the past. Being in the bed was not good. Nope. I didn’t like that part at all. But it was necessary.

I got an ear infection that swelled my right ear completely shut. I couldn’t hear squat. The ENT doc came in and had to pry it open to stick a ‘wick’ in for the antibiotic drops to seep down to the infected area. Then she came back a few days later and sucked out the gooey stuff with a little metal vacuum. That was an odd sensation. I asked her to please avoid going deep enough to slurp out gray matter. She agreed.   That  ear infection drifted into my neck, so I swelled up like some lopsided mumpy person. I was in isolation for about 5 of the 6 weeks. I could walk in the enclosed hallway with a mask, and I could walk around the room. I was attached to an IV for more than 5 weeks (nearly all of that on Vancomycin and Gentamycin for my friends who know what sort of antibiotics those are; if Vanc and Gent can’t kill something, it probably can’t get killed).  I don’t  think that thing was taken down until a day before I went home.  I was too tired to do much of anything; got a heel sore for my lack of oomph.  The day I wanted to go find chocolate in the gift shop was a big day !

I got 25 units of platelets and red blood cells combined. I might not be Swedish anymore (or Norwegian – my biological ethnicity).  I’d developed purple polka dots everywhere from mini-hemmhorages. My platelet level dropped to about 7. It should be  around 150-450 (actually measured in thousands, but nobody says ‘thousands’ when they talk about the counts).  So I had to have the platelets (13 units), or die.  I was at the point where a sneeze could have caused a stroke.  I was very anemic, so that’s why I got the 12 units of red cells. Not enough of those to carry oxygen around my body.  I think I’m finally understanding the phrase my oncologist used this last couple of weeks….I was ‘dead sick’. But I watched ‘Funniest Home Videos’ for 3 hours each afternoon and evening, and laughed as much as I could.

Neupogen/Neulasta…the shots to increase my white count were worse than any injection I’ve ever had- including spinal taps. The pain from inside the bone was indescribable. Dilaudid didn’t fix it.  I got those shots every weekend for about 3-4 months during the arsenic, as well as a few in the hospital during that first 6 weeks when I was first diagnosed. I didn’t know what was causing it at first, and didn’t want to be a wimp, so when the tears came, I didn’t press the call light. I didn’t want to be one of those patients.  When my nurse came in and saw me crying, she told me that she’d call and get some pain meds ordered- and to not just sit and hurt. IV Dilaudid. It dulled the pain, but nothing fixes that sort of pain. When I saw the ad for it in a cancer magazine in my oncologist’s office, and it suggested using Tylenol for that pain, I was offended at their lack of awareness of their product.

Then I was told I’d be getting arsenic infusions. Arsenic. The stuff that is normally discussed on forensic shows, ending with someone getting a life sentence.  Seems that arsenic fixes the subtype of acute myeloid leukemia that I had.  That and some stuff that is like accutane on steroids- ATRA for short. The combination (along with two other pills) reconstructs chromosomes that cause the leukemia. I ended up going into remission about 3-4 weeks into the first hospital stay.  That amazed me. More reason to not get all bent out of shape.  The process wasn’t pleasant- but no need to get all worked up.  SO I got 2 25-dose cycles of arsenic. I had to be on a heart monitor, so drove to the hospital 50 times for those infusions.  I drove there on Saturdays and Sundays for the bone-crushing  shots to increase my white cell count every weekend while on the arsenic.  And at home, I was like a blob. The Monday that began the very last week of the arsenic, I got shingles. On my butt and crotch. That wasn’t very nice.  But it wasn’t the horrible pain I’d heard about. The shot side effects were much worse. But the shingles were quite annoying. Mostly because they prolonged the end of the arsenic.

Next was a brief course of  ‘the red stuff’ and the anti-puke infusion that went along with it. In the middle of all of that, I had a MUGA scan (heart function test), that showed my heart was on the edge of failing…so no more of the red stuff.  But my hair fell out again… leaving a sideways Mohawk from ear to ear. THAT had to go… I think that’s when dad bought me a new hair clipper, and came over and got rid of that (he did the trimming, and took the clippers back home with him in case I got some wild idea to mow my own hair, and end up slicing up my head). It looked like I had a dead animal lying across my scalp.  I never minded being bald- but the quasi-PETA poster look had to go.  After that, my hair grew back slowly, and straight UP for about 3 inches before it finally fell over and looked like hair. Before that, it was like a porcupine and chinchilla did the wild thing and left their offspring on my head.  Bah.

After the arsenic and red stuff, I had to take three different pills (ATRA, M6Mercaptopurine, and methotrexate) in various doses for one year.  I made it about 11 months.  I hadn’t expected the muscle and joint pain from those medications. I’m not one to read up on every side effect known to man when I’m taking a medication.  Even as a nurse, I figure if I know the really bad stuff that can happen, I can live with the rest. Just get enough information to not end up dead.  Inconveniences in order to survive seemed a reasonable trade off.  I thought I’d torn my right rotator cuff- my shoulder hurt that much.  My back and legs felt like I’d been flayed with a serrated machete, and rocks pressed into my bones.  I told my doctor I’d tough it out; the hydrocodone was a joke, but if hurting meant staying alive, I’d put up with it. He said I’d had enough.  He’d been right about everything else, so I’m trusting that it won’t matter that I didn’t have that last month’s worth of those 3 pills.

So I guess that’s why I hate cancer.  The memories aren’t good! I’m still in the first year of monitoring post-chemo, and will have routine bone marrow biopsies and lab work for the rest of my life- though the frequency will diminish. In April 2015 I will be considered cured. I do have some days when I wonder if I’ll be lucky enough to not be re-hospitalized for relapse.  There’s always that ‘is it really gone?’ in the back of my now hairy head.

And yet, I’m so incredibly fortunate and blessed to have been diagnosed with a cancer that can be ‘fixed’.  I’m not unaware of that.  My outcome is expected to be excellent, and I’m very aware that I could have been long gone had it been a different subtype of the same leukemia.  I don’t take anything related to my treatment for granted.  I know people may find my anger unjustified… but we all deal with cancer in our own ways. I can’t stand hearing about it in a vague, disconnected sense. But when I know someone, I want to be a support for them, because I DO get it.  I just find it too personal to tolerate the ‘poster people’ for cancer. I wish them ALL the best… but just not in my face.  Maybe this is offensive.  Fine.  But it’s honest, and it’s mine.