Feeling Deformed… and Being Needed

I just got back from the endocrinologist’s appointment… they always weigh me there. I already know the number will be horrible before I walk in the door. I know it every time I look in the mirror, or remember the rings I can’t wear anymore, or wonder why I look like an orangutan (my chin has more than doubled).  I detest what I see when I look at myself, so I avoid it whenever I can.  But, bless the doc’s heart- she didn’t rag me about it.  My diabetes numbers are very good, my blood pressure was 98/60, and my blood sugar records were more likely to be on the low side than too high- so it’s not about too many carbohydrates.  And, I’ve stayed within 3-4 pounds for a  year.  But I’m not happy.  Not by a long shot. I look horrible.

I know that as a Child of God, I’m supposed to look at that to determine my self-worth.  I know that He has everything under control, and that He has some reason for this.  I’ve tried so many ways to lose weight, and it just won’t move. I’m afraid to get too radical, since I have a history of some pretty significant starvation and eating disorders. I don’t want to go back there.  SO, how am I supposed to learn to accept myself like this?   I’m unacceptable !  I don’t know what He can do with me like this to be of use to Him.  But I have to trust that He’s got it figured out.

My oncologist told me to just be thankful that I’m alive; many people with acute promyelocytic leukemia don’t make it… I know of two people by name who didn’t even know they were sick  until a day or two before they died from brain bleeds. One was 29 years old, the other was an 11 year old kid.  They both shook me up more than a little.  I was pretty sick in the hospital for six weeks… and initially I lost weight on the induction chemo. Then came the consolidation (arsenic), and maintenance (M6-mercaptopurine, methotrexate, and tretinoin)… 19 months total.  I blew up by 50 pounds from the lowest post-induction chemo weight (30 pounds from before the cancer diagnosis). It’s humiliating.  YES, I’m very thankful to be alive, but I feel like I’ve failed at getting my body into better condition.

My mobility is limited because of degenerative disc and joint disease, bone spurs, and fibromyalgia. My activity tolerance is limited by dysautonomia.  I’ve tried sitting exercising, and my heart rate gets to the point of making me dizzy and pre-syncopal.  I can’t get in a heated pool, or the heat will trigger my blood pressure to nosedive.  I’d slink under the surface of the water, and drown. Not helpful.  I can do some isometric stuff- but that hardly melts off the fat.

But I am thankful for a lot. I love my new puppy, and she needs me to be here for her.  She’s someone who notices if I’m around or not, and wants me close to her. I need that. I don’t get any sort of personal satisfaction from being a nurse anymore… I miss that a lot. I loved working, and am thankful that I had the years I did.  I am very thankful for the stuff I’ve survived.  I want to be here.  I’d rather hate my body than have it parked in a marble orchard somewhere (that’s what my dad calls cemeteries).  I enjoy many things (mostly on TV, or online).  I’m thankful that one day, I’m promised to have a new body in heaven.   I’ve requested a size six. 🙂  It’s just hard for now.

My puppy doesn’t care if I’m a size &^%&# or a size zero.  She just wants me here. When I call her name, she wags her tail as if I’d just given her the best prize in the world.  To her, I’m enough.  I’m hers.  I guess maybe I’ll just have to start there, and have that be enough ❤

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 😉

When It’s Too Late To Fix Leukemia

This week, a local anchorwoman died of complications from leukemia. She was diagnosed on Tuesday and was dead Thursday night. Two days. That was it.  She had been working as scheduled  up until the day she called 911 for a worsening bladder infection, with severe pain and nausea. Then she got the devastating news she had leukemia. The next day she needed emergency brain surgery, and never woke up. She was 29 years old. Vibrant. Professional. Animal lover. Upbeat.

You can search:  Jeannie Hayes, WREX-TV 13, Rockford, IL and get more of the media reports.

Of course my first thoughts were with her family, friends, and coworkers. They had no time to really register what was going on.  One day, she was working, the next day she finds out she has cancer, and on the second day she died.  Scary stuff.  I’m sure they’re still in somewhat of a state of shock. Her viewing was today at a local church.  A week ago, their lives were ‘normal’.  They had no warning.

As a leukemia survivor (also with acute myelocytic leukemia, subtype M3, or acute promyelocytic leukemia), it hits really close to home. I don’t know what subtype Jeannie had.  I found out about mine through a standard CBC (complete blood count) that was part of my annual diabetic assessment. My lab work was BAD. As an RN since 1985, I didn’t necessarily know what flavor of ‘bad’ I had, but I knew it wasn’t good- I had a bit of warning.  I had been scheduled for a bone marrow biopsy, but didn’t make it to that appointment before the shortness of breath led me to a 911 call. I have a history of blood clots in my lungs, and have been told to always get anything ‘funky’ checked out. I knew what my lab work looked like. And I knew that the shortness of breath was likely due to anemia. But I never know…

So, I’m in the ER for hours (crazy night there), and got admitted when the doc told me she didn’t know what was going on, but my labs had dropped by half in a couple of weeks (there wasn’t much room for them to drop). She was really concerned. The next morning I met my oncologist and within 10 minutes they were doing the bone marrow biopsy.  The morning after that, I got the diagnosis, was moved to a room in an area set aside for those who must have as minimal exposure to infection as possible, and started on chemotherapy pills.  I also got a PICC line inserted, even though my platelets were horrible; I had to have vein access for the IV chemo that started the following day.  I soon developed purpura on my legs and abdomen (tiny purple hemorrhages from low platelets)… not a good sign. Thirteen units of packed red blood cells (blood transfusion) and twelve units of platelets were needed during my stay… THANK YOU, blood donors.

Had I not gone for the annual diabetic lab work, I wouldn’t have lived. My oncologist told me that I was in really bad shape.  He called it ‘dead sick’ in his Iranian accent.  And I remember being too sick to care what they were doing. I had some infections set in, and was on vancomycin and gentamycin for about 5 weeks. For those who know what those are, they know that they’re strong antibiotics. I also was given 2 ‘protective’ eye drop antibiotics and steroids.  The ear infection and cellulitis into my neck and jaw were pretty bad.  The ENT doc had to pry my ear open to put in a ‘wick’ for the ear antibiotic drops to seep into- there was no opening in my right ear from the swelling. None…it was ‘slammed’ shut with edema and infection. The ENT also had to suck out the pus from my ear.  My temp was over 103.  For someone with no immune system to speak of, that’s not good.  I got very lucky.

If I hadn’t had that routine CBC, I wouldn’t have gotten any follow up, or known what was going on.  I’m so used to having something go wrong medically, I blow off a lot.  Note to self: don’t blow stuff off.  My ‘vision’ of my demise is me just going to bed, and not waking up.  My dad may have found out I was dead after not hearing from me for a couple of days. I hate to think if he would have come over and used his key to get in, finding me on his own… and my dog wandering around confused (we talk nearly daily as ‘attendance checks’- he’s 80 years old, and I’m a train wreck- we try to keep track of each other).

I’m so grateful I found out in time to get help.  I’m expected to be OK. I went into remission during that first 6 weeks in the hospital (April-part of May, 2010).  In April 2015, pending no relapses, I will be considered cured.  I’m one of the lucky ones. It was hell going through chemotherapy for 19 months, including 50 doses of arsenic infusions (IV), and 11 months of tretinoin, methotrexate, and M6mercaptopurine.  My body went through a lot. But, I got a chance to live.  APL is one of the most curable forms of leukemia, when it’s detected and treatment started immediately.

How I wish Jeannie would have had that same chance.  Even ‘just’ a chance to say goodbye, and have some time to do what she needed to do before ‘just’ not being here anymore.  I wish that for everyone.  IF someone ends up with cancer (or anything terminal), I wish them the chance to see their loved ones and for them all to have the opportunity to let go of each other, hard as that is.  I wish them the chance to ‘finish’ things. My understanding via the tribute on her news channel (WREX-TV 13), is that her family got there when she was in a coma after the emergency brain surgery. They came as fast as they could, but the cancer was faster.

I later read that the average time someone lives without treatment after the onset of the disease (with minimal symptoms) is 30 days.  Many people are diagnosed at autopsy.  The biggest ‘tip’ I could give anybody- if you feel something isn’t right, get it checked until you get an answer that makes sense.  Not everybody can be fixed.  But everybody deserves a chance.

For everyone else, it’s probably a good idea to know what you want to say to people, and do it.  Get things put together.  None of us are guaranteed tomorrow.

EDIT- 11/21/2012- Today, WREX gave info about the specific type of leukemia that Jeannie Hayes had. She had acute promyelocytic leukemia (APL).  This is the same type of leukemia I had- and makes it even more sad, since it’s one of the most curable when it’s caught in time.  Like Jeannie,  I had no specific symptoms to suspect cancer. I had routine lab work done.  Jeannie had the bladder infection, and it was ‘caught’ when she went to the ER for that.  I also had some bleeding issues- but was in the hospital, and because I was already being treated, I was able to recover.    My thoughts and prayers go out to Jeannie’s family and friends.  There was no time to say goodbye.  ❤

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.