Million Dollar Baby

Well, I called it.  Three hundred dollars a pop.  Ten dollars a pill.  And that's a bargain.  The cost to my insurance company is over $8000 per month.  When I was diagnosed with CML, my doctor told me that, with medication, I could live a normal lifespan...doing the math, it's going to cost over a million dollars just to keep me alive to see my forty-fifth birthday.  It's staggering when you think about it.

Now three hundred dollars a month might not seem like a lot to a lot of people.  And to others, I'm sure that it seems insurmountable.  For me, it makes things tight.  It means strict budgeting and coupon cutting and working overtime.  So, I called my pharmacy - they have a patient assistance program - and they worked a little magic.  An organization called Patient Services, Inc is graciously providing financial assistance so that I can afford to both live AND eat.  My heartfelt thanks.

Although, I could probably afford to cut back on the eating a little bit.  I'd gone up another pound at my last appointment.  My doctor asked me if I had any loss of appetite.  Yeah right.

I did tell him that I've been tired though.  Tired all the time.  And he said to me, "Yeah, but you're old."  Sometimes I feel like my doctor doesn't take me seriously.  But then, he is an oncologist.  In all honesty, I'm probably the healthiest patient that he sees.  Every time I see him, I'm doing a little bit better.  Probably not the trend with most of his other patients.

Another good appointment for me.  My BCR-ABL is down to 6.8 from 14.  My white cells are at 4.1, which is within the normal range, and my appointments are now every three months instead of every two.  Hooray!

Side effects have been manageable.  Hip pain.  Especially in the left hip.  And mouth sores.  I've had four canker sores in the past two months.  They're painful, and slow to heal.  Occasional nausea.  Persistent fatigue, but I think I push myself too hard.  All in all, I'm hanging in there.  Living with cancer, and thriving.  Who would have thought?

CML and Health Insurance

I didn't realize that I had great insurance, until I didn't anymore.

Three weeks ago I went to the annual meeting for Open Enrollment for health insurance through my workplace.  I really, honestly, naively expected to just be able to check the requisite box, and continue with the same coverage that I currently had.  Ha!  As our broker gave her power point presentation explaining how this insurance was better than our previous coverage, my face just drained of color.  I went stark white, and I couldn't hear what she was saying.  (My co-worker explained this phenomenon perfectly to me the other day.  She said, "It was like my brain knew what was coming, and it tried to protect me from the trauma of hearing it by making me deaf.")  I swear to god, that's what happened to me.

So as our representative stood up there, explaining the prescription drug tier system, I was watching her mouth move, but not catching whole sentences.  This is what I was able to piece together from what I did catch.  "Generic drugs $20 co-pay."  I am definitely not on a generic, because, to my knowledge, there isn't one yet.  A few months ago my doctor discussed switching me to a different kinase inhibitor (Spycel or Tasigna) as they have slightly better response rates than Gleevec does.  At that time, I resisted because I have heard that the patent for Gleevec expires in 2015.  At that point there is a possibility that it could become generic, thus making it a lot more affordable over the long term.  And my type of cancer is long term.  I have to think about what makes sense for me for the next 50 years, because I could potentially be living with cancer for fifty years.  Don't get me wrong.  If Gleevec is not working like it should, or if I should develop a resistance to it, I'm all for trying something else/newer/better...but for the time being...if it ain't broke...

So the twenty dollar option is definitely not me.  The next tier has a $50 dollar co-pay.  Doubtful that I fall into this tier.  As she was describing the third and fourth tier medications "preferred specialty drugs" I'm thinking, this sounds more like me.  She breezes over the third and fourth tier options, telling everyone in the room that it is very unlikely that they will need anything in either of these two tiers.  In fact, I probably am the only one in the room that does.  And how much is it going to cost me?  Jury is still out, but it's looking like $300 per month. (If I do not qualify for financial assistance from a foundation.)  Potentially forever.  Fuck me.

Besides that little gem of information, I found out that labs will now cost me $30 every time I have to have blood drawn.  A visit to my oncologist will come in at $60 now instead of $40, and if I need a CT or any other imaging test, that will set me back $250 per visit.

Buuutttt....good news is, and she really honestly told us this like it was good news, if I have to have another hospital stay in the upcoming year, well that's only $500 a day for the first three days.  Hooray.  They pretty much may as well admit me if I need anything more than a blood test.

Don't get me wrong.  I still have fan-fucking-tastic insurance compared to what most people I know have, but I'm now someone that actually needs insurance, and has to know what my health care is going to cost me.

Thanks cancer.  Looks like I work for you now.

Six Months Living With CML

I never used to have high blood pressure.  It's always been good - right smack dab on the money - 120 over 60 - nine times out of ten, but ever since this whole cancer fiasco, I've noticed that its been creeping up at office visits.  I mean, can you blame me?  The results that I'm there for are only a life and death matter.  This time 130 over 80.  I try to act nonchalant about the whole thing on the outside, but my insides are clenched up like a stress ball - which, while bad for my blood pressure, is probably good for my abs.

So it's just about a week shy my six month mark.  I've been living with the knowledge that I have cancer for just about six months now.  Considering that, this appointment was a big one for me. (Every appointment is a big one for me, though.) I've been doing a lot of speculating.  There have been a lot of "Choose Your Own Adventure" scenario's playing out in my head.  What if my blood counts are too high?  (Will they change my medication?  Will I have to go back in the hospital?)  Then again, what if my blood counts are too low?  (Will I have to stop medication for awhile?  Will I have to go back in the hospital?  Will I have to be off work?)  What if my BCR-ABL test comes back higher than the last time?  (Will I....) Those are only a handful of the things that I think about, every time I'm due to see my oncologist again.  

It turns out, that, this time at least, my speculating was all for naught.  My white blood cell count is at 4500, which is within range.  And my BCR-ABL (the mutant gene/protein that causes cancer cells to grow) which was at 21 percent at my last visit (on July 22nd, 2014) is measured at 14 percent this time around.  So I am moving in the right direction, and going down!

In other news, the only result that I got that I was not happy with was proof that my weight is creeping up.  I've gained 17 pounds since I was diagnosed.  I think that it's pretty sad that in my lifetime, the only time that I thought that my metabolism was working as it should was when I had out of control cancer.  Most of the other Gleevec side-effects that I have been experiencing are decreasing both in frequency and intensity, except for the fatigue.  I still do get sick, and do have an occasional bout with bone pain, or sun sensitivity, but not as often as before.  All in all it seems like my body may be adjusting, and coping better.  I'm guessing that the gained weight, though, is not going to be miraculously going away on it's own, so readjusting to my new metabolism is something that I'm going to have to work on.  

In line with that, I asked my oncologist yesterday, if, in his experience, changing my diet could help with my cancer.  Ever since I was diagnosed I've been getting tons of diet advice from friends and family.  Eat more eggplant!  Change to clean eating!  Cut out meat and dairy!  Eat organic!  So I asked him if there IS anything that I CAN do that will make a difference in regards to my cancer.  He smirked, shook his head, and said "Your cancer is caused by a gene mutation.  Changing your diet is not going to have any effect on that.  Your medication is.  Keep taking your medication."  Clean eating may not be a bad idea to help with my most persistent side effect, though.  And I do like eggplant...

Six weeks until my next round of blood tests.  Here's to hoping that, with regards to cancer, they're uneventful.

On Vacation with CML

So I really did try to avoid it, but I ended up keeping my doctors appointment with my PP that Friday, and going in to get checked out.  I've always been the type of person to avoid going to the doctors.  When I was little, I hated it so much that my mom would have to bribe me, to get me to go to any sort of doctor's or dentist's appointment.  Sometimes she got off with a milkshake after my appointment, and sometimes she had to shell out as much as 5 bucks.  Not that I was at all well behaved once I got there.  I had a dentist that told me to raise my hand if it hurt, and he would stop.  I raised my hand.  He didn't stop.  I compelled him, by pushing his hand away.  My mom was asked not to bring me back.

Another time, they were attempting to take blood for some sort of routine blood test, and I decided that they were not going to poke me with a needle.  It took two nurses and my mom to hold me down, and even then, I struggled and fought like a fish on a hook.  I remember hiding behind the examination table, watching blood drip down my finger (they'd poked me, and I hadn't felt it, I had been fighting too hard.)  So, suffice to say, I have a little bit of an aversion towards going to the doctor.  It's ironic, now, that I have to go every month.

When I went in, my cold sore had cleared up, but I'd had a nasty cold for 6 days that just seemed to keep getting worse.  He listened to my lungs and told me that I most likely wouldn't require antibiotics, but did end up giving me a z-pack since I was going on vacation "just in case".  I toughed it out for 4 more days, but with a chest cough that seemed to be getting deeper and more seated, I started taking antibiotics on the first day of my vacation, and by day 3 felt almost completely better.  I just couldn't be that awful person with the hacking cough on the airplane.

Kauai was beautiful, but hot.  I am a pale translucent sort by nature, so the sun and the heat has always been a little hard on me.  I think that I'm more well suited for the drizzly gray of the English Countryside than the white sand beaches of paradise.  It seemed to be especially hard on me this go around, though.  Every time I was in the sun for any prolonged period, my skin got red and splotchy.  I had sunscreen on, but every night, we would get back to the condo, and it looked like I had gotten burned.  Usually when I woke up in the morning, the splotchiness was gone, and the redness had faded.  I'm thinking that this is another Gleevec side effect that I had not yet had the pleasure of experiencing.  Definitely noted.  Next time, a higher SPF sunscreen, and more light layers.

Also, in non cancer related news...Keith and I got engaged.  After chasing a beautiful sunset through a Hawaiian rain forest, he got down on one knee and asked me if I would marry him.  How could my answer be anything but yes?  Actually, I think I cried and nodded.  When I was in the hospital, he told me that he hated being referred to as my boyfriend, that he should be my husband.  And now he will be.  Feeling so blessed to have so many people that love me as I am, even with all of my flaws; and incurable cancer is a big one.

Test for my BCR-ABL coming up.  I see the doctor on Sept. 26th.  My levels need to go down significantly.  Fingers still crossed on that one.

Getting Sick with CML

So last week, much to my chagrin and dismay, I felt the familiar tingling of a cold sore starting.  Sure enough in about 6 hours, a small fever blister appeared on my upper lip.  Four days later, I got the cold that my boyfriend has been trying (not) to give me (and I've been artfully dodging) for the past two weeks.  I spent the majority of my weekend in bed, trying to stave off the worst of it by getting as much rest as possible.  To no avail, unfortunately, as what started as a scratchy throat and an irritatingly runny nose, has manifested into a heaviness in my chest and a disgusting, unproductive cough.

This is the first time that I've been "sick" since I was diagnosed with leukemia.  My first reaction is worry that my immune system is down - that my white count is either too low  (can be a side effect of the Gleevec) or too high (from lack of response to the Gleevec.)  Then I have to take a step back, and realize that everyone gets sick.  Keith has had the cold for a good 10 days, so it was almost inevitable that I would get it too.  My oncologist said that "I'm just like a normal person now."  And normal people occasionally get sick.  Not time to hit the panic button yet.

I did call my PP, however, to see if I am "allowed" to take cold medication.  After a telephone consultation with his nurse, I was told, "You can go ahead and take whatever cold medication that you need.  You don't have any health complications...besides your LEUKEMIA which seems to be well under control."  Well okay, then.  Besides that pesky leukemia, I'm a normal human being.  With a nasty cold.  The cold sore is slowly exiting, but has been sticking around for going on 9 days now.  Day five of my cold is in the predictable chest cough phase.  I have a tentative appointment with my PP on Friday afternoon, which I will keep if I don't feel better on Thursday morning, but I'm hoping that things will resolve themselves, my immune system will kick in and fight this end of summer cold on it's own, and I will be able to cancel.  Until then, it's a strict regimen of fluids, Vitamin C, and NyQuil for me.

CML - And Fat Face Mcgee

As I said before, I wanted to go back to work so badly when it was necessary for me to be off, and then when I got back, it felt really hard to keep up with adding work back to my daily life.  But I adjusted.  I had to.  I had to set priorities, and let some things fall by the wayside.  The hard part is trying not to beat myself up about it.  I still manage to get a lot done for someone with the cancer.

So, back into it.  It's been really important to me to try to recall the most important details about cancer and how it has affected my life since I was diagnosed.  Ever since I learned that I have CML, I've been searching not only for factual information about chronic meyloid leukemia, but personal information - I wanted to know about other peoples experiences, and how they deal on a daily basis with having cancer.  It helps me when I'm trying to gauge whether my experiences are "normal".

Speaking of normal, so at my May 2nd oncology appointment, my numbers are nearly normal, and the doctor lets me return to work.  At my May 30th appointment, I've reached normal range for my WBC.  I'm at 6500.  Dr. Hillard seems happy with these numbers, and tells me that my cancer is basically in hematologic remission.  Getting my white count within range earns me a two month hiatus from the doctor, and I don't have to go in again until the end of July.

Having two months between appointments is a little scary.  I'm worried that I may be going down hill, and no one is monitoring me closely enough to catch it.  I wash my hair, and pack by bag again before my appointment.

July rolls around, and again, I'm the best looking person in the oncology waiting room.  The only magazine that I'm able to find is called "Lucky" and I think that it's someones idea of a sick joke.  I really have been doing fairly well, just struggling a bit with gleevec/cancer side effects.  I don't  know whether to blame the things on gleevec or cancer, so I just try to cope.  Most notably, these side effects are weight gain - I've gained 15 pounds in almost 4 months.  Some of it is water retention, and my PP gives me a prescription for a diuretic, along with potassium, which I take on occasion, and generally makes a 5 pound difference in my weight.  Fat Face McGee persists.  (I call myself Fat Face McGee when I wake up and am retaining a lot of water in my face, especially around my eyes.  It makes me feel puffy, and rounder.  Sometimes I have a hard time recognizing my features as my own in the mirror on Fat Face McGee mornings.)  Otherwise, the nausea right after I take the pill has subsided some, and now I get it at random times that don't seem to correspond at all with when I take my dose.  I can't seem to shake the feelings of fatigue though.  I'm sleeping at least 8 hours a night, sometimes 10 hours on the weekends, and I'm still so tired.  I wonder if I'll ever get more energy?  I'm also having episodes of bone pain that are more frequent, and more severe.  I haven't had many skin complications, the way that a lot of other people do, but I have noticed that my skin is definitely thinner and more prone to tearing in places where my skin is already thin.  I suppose that I'm lucky that most of me is pretty hardy and thick skinned.

My doctor is running about an hour behind, so its a long wait.  When they finally get me back into an examination room, my blood pressure is a little higher than normal, as is my temperature.  Dr. Hilliard comes in and asks me how I'm doing, and I say, "You tell me."  My blood counts are good again.  My hemoglobin is back to normal, in the mid range of normal, actually, and my whites are down to 5100.  I tell Dr. Hilliard that I'm still plagued by fatigue, and he tells me that according to my blood work, he does not see why...my red blood cell count is good, and even my thyroid tests in the mid normal range.  I was hoping that it was low, as that would be an explanation for feeling cold all the time, my fatigue, and my weight gain.  He tells me its normal - good even - and I say, "So you're telling me that I'm just getting fat all on my own?"  And he smirks a little, and says, "You're not the only one.  If I could have a Baker's hamburger or a Hostess pie for every meal I would be perfectly happy."  Ha.  This man gets me.

So there was one additional blood test this time, that I don't usually have done, and this is to test the BCR-ABL protein in my blood.  This is the protein that is supposed to be inhibited by my Gleevec. ( I'm just about at four months into my treatment, and I have never had a bone marrow aspiration yet.  I don't know if this is strange or not.  From my research, it looks like most people have one shortly after diagnosis, but they have yet to mention it to me, and I'm certainly not going to bring it up and ask for that kind of pain if my doctor doesn't think that I need it.)  So the BCR-ABL test is supposed to measure my cytogenetic response to the Gleevec, which is the second stage to gaining "remission".  My level on July 22nd, 2014 is 21.3.  By the look on Dr. Hilliard's face, that is not as good as it could be.  He tells me that they like to see it much closer to zero by the six month mark.  So that gives me about nine weeks, cross my fingers, for it to go down significantly.  I don't ask him, maybe I'm scared to, or maybe I just don't think of it at the time, what happens if it doesn't go down?

That's something that I really don't want to think about.

Back to work with CML

I've been waiting so long to get back to work, that I am surprised by how tired it makes me feel.  For the first week, everyone asks me if I am okay every day.  I appreciate the concern.  People have been genuinely worried about me, and I can tell that I have been missed.  I can tell by the huge list of things that I have to do!  I soldier on, and crash when I get home.  Barely managing to cook and clean up after dinner, before I crash for the evening.  Most evenings there is no shower; it just will have to wait till morning.  I feel pretty accomplished, and quite proud of myself that I'm able to go back to a fairly regular routine, but I'm tired, and it's much harder than I feel like it should be.

I'm still at Keith's house.  I think that I have unspokenly moved in.  I have hijacked three of the under the bed drawers, and have shoes lined up against the far wall.  Even before I lived here full time, I was staying over most nights, anyway, so it's not really a big stretch.  I just have more stuff that is floating around now.  It wasn't a spoken agreement, but he seems to be okay with my worming my way in, and I see him using my brush in the morning.

Like I said before, I try to keep with my regular routine, which honestly is a lot. I wake up at 6:00am, and give myself about 30 minutes to wake up.  I'm addicted to Red Bull, and drink a sugar free red bull instead of a coffee.  Looking at the nutritional information, I note that it has 100% of my daily B-12.  Being anemic, and constantly fatigued, I'm thinking that this can only be a good thing.  At this point, I dig out my exercise shoes, and put my clothes and makeup in a bag.  I drive to my house - my sisters house - I don't really know what to call it anymore so Keith and I refer to it as "the Fawnskin property" in haughty British accents.  This drive takes me approximately 15 minutes.  I then walk the dog at least a mile, sometimes a mile and a half, depending on how much he is dilly dallying.  Buddy is a terrier.  Buddy is a terror.  Buddy is a terror-erier.  I give him his 25-30 minute walk, and as soon as I unhook the leash, he heads upstairs and jumps into bed with my sister.  Dick.

Me, I jump in the shower, get dressed, minimal makeup, make myself a bagel, and head out the door.  I'm usually to work between 8am -815am.  Put in a full day at work, and I'm out again around 5pm.  Home, some sort of extra exercise, hike, walk around the block, short bike ride and then I make dinner.  Clean up after dinner.  Take my pills.  Fight the nausea.   Pass the fuck out.  Lather, rinse, repeat.  As the week wears on it gets harder and harder to get up in the mornings, and I push snooze until 6:10...6:20...by Friday it's 6:30 before I manage to drag my ass out of bed, and by 9pm I'm falling asleep sitting up.

It's really, really hard.  I feel like people should be cutting me a little more slack.  (Really, maybe I should be the one cutting myself some slack, but I'm not really good at that.)  Working 40+ hour weeks is absolutely exhausting, but I don't know if it should be.  I don't know what I should feel like.  I've been scouring the internet for information about gleevec.  I'm trying to figure out if I'm tired because of the cancer, or tired from the medication that treats the cancer.  Should I even be feeling tired if my counts are basically back to normal?  What is normal?

Aside from that I have new side effects.  I don't know if they are from the cancer or from the gleevec, but  I feel like I have chemo-brain.  Some day's I'm a whirlwind and I get so much done...and then the next day I can't concentrate on anything.  I can't find the words I'm looking for when I speak, and I stutter over what I'm trying to say.  It's embarrassing and terrifying all at the same time

I'm also having bone pain.  Not a constant stabbing pain, but a sharp stab, and then a constant ache that lingers anywhere from 10-30 minutes at a time.  I'm getting it in my large bones.  My upper arm.  My knees.  Both my upper and lower legs.  It makes me worried about the integrity of my bones.  Before I was diagnosed I was having a pain in my left hip.  I attributed it to sitting on a balance ball, instead of in a chair at work.  Or wearing heels.  Or sleeping wrong.  But looking back, I'm thinking that it was the cancer.  I should have paid better attention.

I'm also gaining weight.  A good amount of it is water, but some of it is not, and this is making me very unhappy.

All I know is that some days,I  feel sure that the cancer is winning.  I feel sure that my whites are back up, and that my red blood cells are down.  I feel constant paranoia that I'm falling apart below the surface, and no one is noticing.

I don't trust myself any more to know if I am okay or not.  When I went to the doctor with an enlarged spleen and a white blood cell count of 516000, I didn't know that I was sick.  Just a little tired.  So given that I was so ill that I needed to be hospitalized and I didn't even know it, I feel like I can't trust my own instincts anymore.  I feel like I need the doctor to tell me how I'm doing to know how I should feel.  He says I'm nearly back to normal.  All I know is that I don't feel normal.  I feel tired.  And fat.  And achy.  And scared.

I'm pretty damn scared that this is my new "normal".

CML - Thirty days with CML

I've been doing everything that I can to try to get my white blood cells to go down.  I've been drinking tons of water.  My primary care physician told me that I needed to drink extra fluids to flush the white blood cells.  I've been drinking so much water, I squish when I walk.  Every morning when i wake up, I lay in bed and picture my WBCs floating away.  I say my positive affirmations.  "My white blood cell count is going down."  "The Gleevec is working."  "I am getting better everyday."  I try to banish all negative thoughts from my mind.

Given the fact that my white blood cell count went up at my last appointment, I'm more than a little nervous leading up to my appointment on May 2nd, 2014.  I have a bag packed in my car, just in case.  I've decided that I will drive myself to the hospital if Dr. Hilliard wants to put me back in.  There is no way I'm going to pay for an ambulance ride, when I'm perfectly capable of driving myself.  (And I'm getting a little bit worked up over nothing.  Or possibly nothing.)

For some reason I am always late to this appointment.  I just cannot seem to get myself here on time.  I take pride in noting that I am again the best looking person in the waiting room.  It's kinda a sad victory.  I'm also the youngest person in the waiting room.  I imagine that the other people are maybe thinking I am waiting for someone else. ( I'm very self involved these days.  I'm sitting in a cancer waiting room, where everyone has had some kind of brush with cancer, and I think that people are speculating about me.)  The nurse calls my name.  I feel queasy, and its not the Gleevec.

I'm shocked when they take my blood pressure that it is low/good.  Dr. Hilliard comes in, and asks me how I am.  "Good.  Tired."  He takes a look at my paperwork, and says, "Well your counts are good.  White blood cells are down to 15.  Its like you're a normal person again."
"Fifteen?  Fifteen thousand?  Really?" I had been hoping to be under 100000.  This is way better than I expected.  Thank goodness.  I feel an enormous amount of relief.  I text Keith a happy face.  Not only are my white counts down, but my hemoglobin is up.  My body is making blood.  Hurray!  I'm so thankful that my body has decided to cooperate in my recuperation.

Dr. Hilliard agrees to allow me to go back to work, and writes me a work release.  I have never been more excited to get to go to work in my life.  Between my hospital stay, all of my "specialist" appointments, and my prescription co-pays, the bank account is running a little low.   I never in a million years would have thought that I would get cancer at 33, but then who ever would, right?
 

CML - Two Weeks

When I am discharged from the hospital, my wbcs are 242000.  They give me this little folder with pockets, like I used to have in school, to keep all of my discharge paperwork in, but this one doesn't have unicorns on it, it has a picture of the hospital.  I'm told that I need to have blood drawn on Monday April 14th.  My follow up appointments with both my primary physician and my new oncologist are set for Friday April 18th.  I'm retaining so much water, that the first two days out of the hospital are painful, but it feels so good to be able to walk around the block, and take a shower and wash my hair, that I feel like I have little to complain about.  

I've been staying at Keith's house, instead of at home.  My sister has a four year old, and Lacey tells me that it's quite possible that she has strep throat.  I know that I'm not exactly immune compromised, but my doctor did tell me to try to stay away from anyone that might be sick.  I miss walking Lacey's monster dog, and sleeping with my cat, but I'm so grateful to be out of the hospital, that I'll take it for now.

I'm super concerned with taking a shower, because of my neck hole.  The nurse told me that I could shower as usual...and I do, taking maybe just a little bit more care.  Its the first actual shower that I've taken in six days, and the first time that I've washed my hair in more than a week.

I'm still not able to go back to work.  Every time I ask, my doctor tells me to just give it another week.  Lets give it a few more days.  I've been doing minimal stuff from home.  Sending a few emails, and delegating the things that can be delegated.  My co-worker informs me that the last count she saw on my voicemail at work is 29.  Then it stopped counting.  Yikes.  I'm anxious to get back.

Going to my appointment on Friday is nerve wracking.  I go it alone.  Its a new office, and a new routine for me.  The oncology waiting room is separate from the general waiting room.  Everyone in it looks way sicker than me.  That actually makes me feel a little bit better.  They call me in fairly quickly.  

Dr. Hilliard comes in and asks me how I'm feeling.  Tired.  Occasionally nauseous.  Aside from that, okay, I guess.  He takes a look at my labs, and my white count has gone up a little.  I'm up to 259000.  Hearing it is a blow.  I was sure that I would have gone down at least a few thousand.  My hemoglobin is low, too, but not critical, so I won't have to have a blood transfusion yet.  He tells me that we'll give it another two weeks, and give the medicine a chance to work.  If my counts do not continue to go down, then he says we may have to consider other options like raising my dosage, or switching to another medication.  I'm pretty bummed that my body is not cooperating, but rationalize my rise in WBC by figuring that my blood is less diluted than it was when I was getting pumped full of iv fluids.  

Its hard to tell my cheerleaders about the rise in white blood cells.  I try to sound super confident that it is not an upward trend.  Inwardly, I'm freaking out a little.  

Two more weeks.  Please let them go down.  Please, please.

CML - Day Six (Cancer Collage)

Every day, from the day I am diagnosed, Keith and I take a gopro picture to chronicle my hospital stay.  And then he made me a collage.  My cancer collage.

CML - Day Five

By day five of hospitalization, I am more than antsy.  I am ready to go home.  I want this thing out of my neck.  I want to be able to take a shower.  Wear a real bra.  Sleep for more than 4 hours without having my vitals taken.

There are murmurs that my release is eminent, but my oncologist dispels those.  He tells me to hang on for one more day.  His amazing nursing staff are trying to arrange delivery of my very expensive medication, so that there is no dosage interruption when I am released.  It actually hadn't occurred to me before now that I wouldn't be able to fill my prescription at the local Walgreen's.  He also tells me that they are working on funding to assist with my med costs, as my insurance will only cover approximately 90%.  So I'm doing some math, and get a flash of panic when I realize that without help from a foundation, my meds could cost me around $1000 a month.  Which I could swing.  For a month or two.  But not indefinitely.  Not for life.  And since there currently is no cure for CML, I'm looking at a life sentence here.  While I'm in the hospital, my medications are part of my treatment.  Thank you to my doctor for truly having my best interests at heart.

Again, no leukapheresis today.  I'm glad of it.  I'm starting to go crazy being tied down.  I'm wouldn't call myself a super active person, but I am used to walking at least half an hour a day, and the only thing that I've been able to do for the past 5 days is get up to go to the bathroom.  One of my nurses clears it with my doctor, and I take a walking tour of the ward.  It is not nearly large enough.  I go all the way down the hallway to the elevators, which I look at longingly, and then back down the hallway to the large windows at the other end of the hall.  It looks like summer outside.  It was persistently cold when I was admitted to the hospital.  I touch the tempered glass, and it's warm.  One more walk up and down the ward.  Keith wheels my pole, pulls the back of my gown closed, and makes sure that I don't collapse.  It's nice to have someone covering your ass.  In more ways than one.

Free at last!

So two days now without leukapherisis, and the nurse gets permission to pull out my catheter/line.  I cannot wait.  It's less painful than when it first went in, but I am so ready for it to be gone.  If I could sleep on my right side again, it would feel like heaven.  I get ready to have another procedure.  It did not go in without a bit of fanfare, so imagine my surprise when she cuts the stitches holding it in place, and yanks it out with one big tug.  And then tries to choke me.

Okay, no, so she was only holding pressure on my neck so that it did not bleed, but the pressure is pretty extreme.  And I am so grateful that it is gone I can hardly stand it.  It looks like I got bitten by a one fanged vampire, but I'm elated.

People are starting to get ready to get rid of me.  If all goes according to plan, I'll be discharged tomorrow.  I've already started to pack my things, which are few, but seem to be scattered about everywhere.

My nurse that night asks me if I have children.  She obviously did not get the memo.  I tell her that I do not, but that I do have a four year old niece.  She stresses the importance of being very careful with my chemotherapy medication (Gleevec) and tells me that I must be careful not to expose children to any of my bodily fluids, especially urine or vomit.  Specifically large amounts of urine or vomit.  Um, excuse me?  Why in the world is this something that she's telling me?  Don't pee or puke on any kids.  Um, check.  Got it.  I'll do my very best.

I wake up the next morning knowing that I need to stay calm.  They won't release me until after I've had my meds, which usually come in around noon.  I pick out clothes to wear.  This is the first time that I'll be fully dressed since I came into the hospital.  I wait for my WBC (white blood cell count to come back), and I'm down again to 242000.  Hard to believe that I was twice that when I was admitted.  My count has been coming down so slowly that I don't think I'll ever get to normal (between 4000-11000).  But if they think I'm okay to go home, I'm certainly not going to fight them on that point.  Look what such good care they've taken of me so far.  (In all earnestness.)

After I get dosed, I can't help it anymore, and I get up to give myself my last washcloth bath.  I can't do my shirt until they remove my ECG and iv, but I can put on underwear and pants.  Except I can't.  The clothes that I have chosen are not fitting.  I am fat! Retaining so much water that my legs are painful.  I feel like they don't bend right, like fatness is keeping them from fully bending at the knee.  My hips are far wider than I'm accustomed to...and maybe it feels like I'm being shallow and petty about it, but the truth is that it's uncomfortable, bordering on painful.  I lift up the little panel on my bed, and push the button that will take my weight.  It's in the 160s.  I'm retaining over 10lbs of water!  But there is no way I'm mentioning this to anyone until they've signed my discharge papers.  There is nothing that is going to keep me from getting out of the hospital today.  So yoga pants it is.

It of course takes ages between the promise of discharge, and the actual discharge paperwork, prescription's, instructions, excetera.  I've got my eye on the prize, though.

Keith shows up right on time, comes all the way in to get me, and then has to run out to bring the car up to the entrance to pick me up.  My nurse tells me that she is supposed to wheel me in a wheelchair, but agrees to let me walk while she accompanies me.

The car pulls up to the curb, and as I slide in, I sigh with relief.  I feel like the fight is over, but I suppose, really, its just beginning.

CML - Day Four

Everyday in the hospital my white counts go down a little bit more.  Every time they do, I feel like I've achieved a personal victory.  My sister, Lacey, and my boyfriend, Keith, are my white count monitors.  If they're not there with me for my leukapherisis, they call afterward to find out my count.  I'm going down too slowly.  By day four I'm still in the high 200,000's.  I feel like it's going to take forever for me to get outta here.

And then on my fourth day in the hospital, they decide not to have me undergo leukapheresis.  I think they want to see if the medication is working on it's own.  My counts go down.  Another victory.  Finally, the thing inside me - this insidious thing that is trying it's best to kill me - is losing it's fight.  And I'm winning mine.  I feel triumphant.  So now it's just a waiting game.

The nurses are nice to me - I'm on the telemetry ward, so I'm probably their youngest patient - and make small talk while changing my linens and bringing in my meds.  They always ask about my family.  "Do you have kids?"  I do not.  I've been on the fence about wanting to have children for awhile now...every time it comes up, I think to myself, not yet!  I'm too young.  But now it seems like I may have waited too long.  Word somehow gets around to my oncologist that I don't have children, and he tells me that while I'm on Gleevec, I should take measures not to become pregnant.  (I look it up later and find that Gleevec has been found to cause miscarriage and profound birth defects.)  So yeah.  That's a little heartbreaking.

       

CML - Day Three

Little did I know when I went to the Emergency Room on April 04, 2014 that I would staying in the hospital for several days.

By my third day of hospitalization, I had it down.  I had learned how to unplug my own iv pump and wheel my little stand into the bathroom (where I was secretly emptying my own pee monitoring cup), found a way to sleep my way through large portions of the night (thank you, morphine), and knew that the chocolate cake was the best thing on the menu.  There were more than a few bumps in the road to get there, though.  I broke down crying when I dropped my dinner off my fork, into my lap.  So frustrated that I was so weak, and helpless.  Keith took the brunt of that tantrum.  Every day he would come in.  Everyday, drove an hour to be with me, and then an hour home.  I could tell that he wasn't eating well, but he's not good at eating well anyway.  He's one of those people that forgets to eat.  I don't think I've ever missed a meal in my life because I forgot, but more than once I've come home from work to find a single coffee cup in the sink, and that's it.  Food is unimportant to him.  It's a foreign concept to me.

There are things that ARE important to him, however, and it seems like he's barely holding it together with those.  He's one of those people that must be well dressed at all times.  He can't even run down to the market wearing sweats - despite the time - he changes into pants that button, and shoes that tie, for all public appearances.  So I know that he's not holding it together as well as he pretends, when he comes in one day wearing two different shoes.  Not vastly different, mind you.  They are both white shoes, but they are not a matched pair.  Unheard of.  And this is how I know how worried, and distracted he really is.  Because when he's there with me, he tries not to let on.  He brings me cold bottles of diet coke, and crawls up on my bed, and we talk about the things that we're going to do when I get out of there.  Digging for diamonds, blizzards from Dairy Queen, seeing the Northern Lights.  I feed him bites of my chocolate cake, and I look at his mismatched shoes, and I know that he's holding it together by a thread.  But he's pretending beautifully.  And I don't think that I could love any one any more than I do in those moments.

I have visitors everyday.  Keith tries to come in the evening, after everyone else has left, so that I'm not alone for very long.  My uncles show up randomly at all times, with books, and stories about fishing trips.  My mom and my sister are constants that float in and out, and bring me nice smelling soap, and clean underwear, and sunflower seeds.  (For months I've had an addiction to sunflower seeds.  Shelled salted sunflower seeds.  I eat pounds of them.  Everyday I eat thousands of calories worth of sunflower seeds.  I fantasize about them, about swimming in a vat of sunflower seed kernels with my mouth open.  I crave them.  And then...all of a sudden...I don't want them anymore.  I don't crave them like I did.  Was it the cancer that made me want them in the first place?  All I know is that something has changed.)

I'm not myself.  I don't want food, and I'm hot.  I'm so hot that I'm sweating buckets.  Everyone comes in wearing sweatshirts, so I'm pretty sure that it is not hot, but I can hardly abide my bed and my gown.  When I lean forward Keith fans my back, and wipes me down with a cool wash cloth.  But it's not enough.  I'm burning up.  I hate to be a pain in the ass, but I ask the nurses for a fan.  "We'll see if the lift crew can find one."  The lift crew?  Is this their crew of men that lifts heavy objects?  How big is this fan?  And then a slight girl in scrubs brings one in, and I realize that the lift crew is called the "lift crew" because they "lift" aka steal items upon request.  It makes me giggle.  And finally I begin to cool off.  Thank you lift crew.

One of my most traumatic experiences happens when no one's there.  When I'm all alone.  Every 8-12 hours I need a new iv bag.  An alarm beeps when there is an hour left, no matter the time.  Two am?  Beep, beep, beep.  Midnight?  Beep, beep, beep.  10 o'clock in the morning - beep, beep, beep.  So it has to be my fourth morning in, I'm guessing 4 am-ish and beep beep beep.  Isabel, my favorite nurse, comes in to replace my bag.  But something is wrong this time.  It looks like the vein in my arm has collapsed.  She pulls my needle, and attempts a new line in the top of my hand.  Twice.  My skin tone is so fair, that my veins are usually visible to the naked eye, but I'm so full of fluids, so puffy, that they keep eluding her.  And I start to cry.  Silently, but I can't help myself.  She tries one more time, in my elbow crease, but that needle does not want to go in.  She calls someone else in to do it.  They're trying to stay in my left arm, since I've got so much going on my right side, what with the port in my neck and all.  The new nurse gets it in on her first attempt, in an awkward spot on the inside of my wrist on the same side as my thumb.  I bleed onto my medical identification bracelets.  She apologizes, and I try to be strong and tell her that it is okay, but I cry the whole time, because it hurts, and I hate this.  I never thought I would be here long enough to need another IV.  They come in everyday and take my blood, so you would think that I'd be used to being poked and prodded by now, but for some reason this is just the straw.  You know the one.  The last straw.  The final straw.  The straw that broke the camel's back.  And all of my sadness, my fear, and utter despair comes flooding out of me, and I cry into my sheet, huge, loud, wrack my body sobs, while everyone passing by in the hallway is kind enough to pretend that they can't hear.  And thankfully, after a few minutes, I pull myself together again.

A momentary lapse.

I have no idea when I'm getting out.  I have no idea how much longer I'll need to be here, and every time I ask when they think I might be able to go home, they tell me "Maybe tomorrow."

I wish tomorrow would come already.

CML - Day Two (The Hospital)

Who: Me
What: Cancer/Leukemia/CML
When: Day Two
Where: Hospital
Why: Good question.

I don't remember sleeping much that night.  For one thing, I just found out that I have cancer.  For two, they poked a hole in my neck - which is now stinging and feeling traumatized.  Third, the nurses come in every couple of hours to take my blood pressure, temperature, and measure my pee.  Oh yeah, that's right.  I have to pee into this little cup thingy inside the toilet, so they can measure my output.  If I'm being rational, it makes sense, as they are pumping saline into me like nobody's business, but I'm not being rational, and I resent the invasion.  Yeah, THIS is the thing that bothers me.  I'm in the hospital with cancer, and I'm pissed - pardon the pun - that they're monitoring my bathroom habits.  Makes perfect sense, right?

They've also started giving me a bunch of pills.  First and foremost - Gleevec - my new best friend.  My original nurse has to recuse herself from my care, as she is pregnant, and cannot physically handle the chemo medications.  Which is apparently what Gleevec is.  My new nurse has to put on the thick super heavy duty gloves before she tears open the little packets.  And I'm thinking, you can't touch it, but I'm supposed to put it in me?  Weird concept.  Gleevec, for those that don't know, (which I'm guessing, is pretty much anyone that doesn't have leukemia, or know someone with leukemia) is also known as Imatinib.

IMATINIB (i MAT in ib) is a chemotherapy drug. It targets a specific protein within cancer cells and stops the cancer cells from growing. It is used to treat certain leukemia's, myelodysplastic syndromes, and other cancers.

So this is chemotherapy.  They give me a "drug information" sheet about the Gleevec.  I see that the monthly cost is approximately $10,000.  (Getting sick is expensive.  I wouldn't recommend it.)  They're also giving me K-tabs (potassium), Allupurinol - for excessive uric acid (when the cells break down, they create uric acid), and stingy little shots in the belly (Lovenox) which is an anticoagulant, so that I don't get clots from being sedentary.  Twelve hours ago I wasn't sedentary, so its hard to believe that this is something that I need, but I don't want to risk it, so I lift up my gown, and let them poke me.  It stings, and then later it burns, and then even later, it bruises something fierce.  The TV flickers in the background, and I drift in and out of sleep a bit.

Around seven am the next morning - April 5th - my phone rings.  Which is weird, and I instinctively don't want to answer it.  I have an aversion to ringing phones.  They make me cringe.  But I ignore my instincts and answer.  "Good morning, would you like to place an order for breakfast?" Uh, really?  It's true.  They call me about an hour before every meal, and ask me what I would like.  The night before I was pretty sure that I had a good room, now I'm pretty sure I'm in a good hospital.  I order breakfast.  I want a bagel, but I don't think that I can chew it.  I'm afraid to move my mouth, my head too much.  My neck hole (which I should start calling my picc line, or my catheter because that's really, essentially what it is - a line used to obtain intravenous access into the body for treatment - is causing me pain and discomfort, and I'm not sure if I'm just being a baby about it, but I feel like I can't move my neck at all.  Scrambled eggs it is.

I eat some breakfast.  (They're monitoring that too.)  They have a little sheet over there by my door that they're writing everything down on.  I'd like to see it.  But I don't ask.  I don't think I'm supposed to want to.  This is when they wheel in the apheresis (leukapheresis) machine.  So here's the deal with leukapherisis:

Very high numbers of leukaemia cells in the blood may cause problems with normal circulation. If this happens, you need to have your blood cell count lowered quickly. Chemotherapy may not lower the number of blood cells until a few days after the first dose. So in the meantime, doctors can use leukapheresis.

Leukapheresis takes about 2 to 3 hours. You lie on a bed or reclining chair, with a tube into a vein in each arm. One tube removes blood and passes it into a machine that removes white blood cells, including the leukaemia cells. The rest of your blood cells and normal blood fluid (plasma) go back into your body through the tube in your other arm. If you have a central line, PICC line or portacath tube in place, your doctor may use this instead of putting tubes into veins in both arms.

The treatment lowers the number of white blood cells straight away. This only lasts for a short time, but it can help until chemotherapy has a chance to work.

Its weird the way you feel when they suck the blood from your body, and then pump in back in.  Cold.  I was much colder than I thought I would be.  I can't see it, because I can't really move my neck, but there is a big bag of blood, with yellowish white floating on top - my abnormal white blood cells - that they are removing from my body.  They come in and take blood right after they finish the procedure, to see if my count is going down.  The nurse comes in with my next round of medications, and I swallow them down.  I'm feeling worn out and dirty.  Its time to get up and moving.


I'm pretty restricted.  I have to call the nurse in to unplug the pump on my iv every time I have to get up to use the restroom.  I won't be making any quick getaways.  I have her unplug me, and try to do a quick wash up at the sink.  I'm not sure if it's the leukapheresis or the Gleevec, but all of a sudden the nausea hits.  My nurse is remaking my bed while I'm up, and I tell her, "I think I need to throw up."  And she tells me, "Oh you just go ahead and do what you need to do." Which kind of baffles me.  She's still tidying up behind me.  I can't help throwing up a little, but I do it in the sink, and I try to clean up after myself, but I'm sick and exhausted, and pretty bummed that I just puked up my $300 pill.  I'm hot and sweaty - which kinda defeats the purpose of getting up and cleaning up - and I get back into bed feeling a little bit defeated.

My blood count comes back, and my white's (my white blood cell count) are down a bit.  The test from last night had me admitted to the hospital with a count of 487000.  I'm down to 465000.

My family shows up.  Everyone has a slightly panicked expression on their face, until they see me.  I get just a glimpse of what they're feeling before they put on their happy faces.  I get everyone today.  Aunts and uncles.  My mom and Keith.  And my sister.  She comes in brimming with questions for me, and tells me matter-of-factly all about CML.

Leukemia is a cancer of the blood. Leukemia begins when normal blood cells change and grow uncontrollably. Chronic myeloid leukemia (CML) is a cancer of the blood-forming cells, called myeloid cells, found in the bone marrow (the spongy, red tissue in the inner part of large bones). CML most often causes an increase in the number of white blood cells (neutrophils or granulocytes that normally fight infection). It is also sometimes called chronic granulocytic, chronic myelocytic, or chronic myelogenous leukemia. About 9% of people with leukemia have CML.

People with CML have a genetic mutation (change) in their bone marrow cells that they develop from damage that occurs by chance after they are born and there is no risk of passing on the gene to their children. This specific mutation is called a translocation, which means that part of one chromosome (a long strand of genes) breaks off and reattaches to another chromosome. In CML, part of chromosome 9 breaks off and bonds to a section of chromosome 22, resulting in what is called the Philadelphia chromosome or Ph chromosome. The translocation t(9;22) causes two genes called BCR and ABL to become one fusion gene called BCR-ABL. It is found only in the blood-forming cells, not in other organs of the body. The BCR-ABL gene causes myeloid cells to make an abnormal enzyme that allows white blood cells to grow out of control.

They haven't done a bone marrow aspiration, but she tells me that she's sure she's a match, and she plans on getting tested to be a donor.  And I'm thinking cart before the horse, here.  They haven't even mentioned testing my bone marrow yet, I don't think they need to start testing yours.  Shes over there on her phone, reading away, telling me all about chromosomes 9 and 22, and how they went haywire.  What I want to know is not really the what of it right now.  I don't care which chromosomes went crazy, I want to know why.  Why?  That's the part that just doesn't make sense to me.

Today I feel like shit.  I feel traumatized.  I feel like I should maybe be in the hospital.  They come in and tell me that I need a blood transfusion.  Two units.  Two units means two bags of blood, apparently.  I get sweaty and nauseous again while I'm getting the transfusions.  I'm irritated with this whole situation.  And I'm snappy and harsh.  I can't reach for a glass of water without three other hands reaching out to help me.  Which is the most amazing thing.  But it makes me feel irritated and helpless, and I vent my frustrations on my hapless family.  Keith tells me they must be giving me "bitch blood".  And he's right.  I am not nice right now.  I feel frustrated.  I feel more sick now that I'm in the hospital getting treated than I did before I knew I had cancer.

Everyone gives me a breather.  They all need to eat.  They've been sitting watching me for the past couple hours, and quite frankly, I'm not much to look at at the moment.  Entertaining is a bit exhausting.  Everyone leaves, and this is when the oncologist comes in.  He's older and jovial, and I like him immediately.  My blood tests have come back positive for the Philadelphia Chromosome, which confirms the diagnosis of Chronic Myeloid Leukemia.  He tells me that when it comes to cancer, I chose well, as CML is treatable.  Survivable.  He feels my spleen, and is impressed with the sheer size of it.  It dominates my left upper abdomen, and has spread out across to the mid right, as well.  He tells me that they plan on continuing leukapheresis until my whites are below 100000, and that the Gleevec is a new permanent part of my life - a medication that I will be taking forever.  I like him.  I wonder if he'll be my permanent physician?

I've had cancer now for a full 24 hours, and everyone has leapt into action.  I'm not sure how these things usually go, but I feel like I'm being well taken care of.  From diagnosis to treatment in less than a full day.  I think I maybe got lucky.  As my family files back in, I feel pretty lucky.

CML - Day One (Diagnosis Continued)

So where were we?  Ah, yes.  I just found out I may have leukemia.  And I'm thinking that a doctor doesn't tell you that "You may have leukemia" unless he's pretty darn sure that you have leukemia.  At least, I hope not.

I'm at work when I get this leukemia call.  Slogging away, thinking about the weekend, and all of a sudden I have cancer.  It's such a weird thing, the way I find out; with a phone call.  Casual, almost.  Leukemia.  An oncologist will be contacting you.  Have a great weekend.  Really?  Is that really how it goes?  I always pictured it like movies portray it.  A private office visit.  You're told to bring a loved one.  Colored brochures titled "Coping with Cancer".  Quiet weeping.  That sort of thing.  Definitely a little more to-do.

So I get this call, and I decide that it's probably okay for me to leave work early, considering the circumstances.  (Yeah, this is me cutting myself a little slack again.)  I have some phone calls of my own to make.  I call my boyfriend (Keith) first, and I can hear in his voice that he's not okay.  He's less okay than I am right now, and tells me to come home.  (I'm on my way.)  My Mom is in denial.  I tell her "The doctor called, and said that he believes that I have leukemia," and she says, "And?"  Silence on my part.  I'm not sure how to respond to that.  After a second, "An oncologist will be contacting me."  And then, its like she didn't hear me because she tells me, "Sometimes an enlarged spleen can mean nothing at all."  And I think, "Um, no," but I say nothing, because she is not making this easy on me, and quite frankly, I don't know what to say to make it better for her.  My sister starts bawling - sobbing uncontrollably - because it's her worst fear confirmed.  (She was right, damn it.)  I get home and Keith keeps looking at me like I'm dying.  I can't be dying, can I?  I don't feel like I'm dying.

And we decide that whatever must be done will be done!  And we're starting to prepare for battle when I get another phone call.  It's my primary physician's nurse.  She tells me that the oncologist on-call took a look at my lab test, and wants me to come in to the emergency room.  Immediately.  And pack a bag.  (And pack a bag?  A bag of what?)  When she tells me this I laugh.  I don't know why.  Because it all seems so fucking ridiculous.  I don't feel incapacitated in any way, so why in the world would I need to go to the Emergency Room?  With a packed bag?

And I can tell that the people in Emergency feel the same way.  Why exactly are you here?  They keep asking, looking confused.  They weigh me (without me knowing it, in a special "weigh you while you're sitting there" chair) and I'm 151 which I'm okay with, and they take my temperature - a little high 99.something - and my blood pressure - which is normal - and stick me in this little triage room.  Someone comes to take my history.  Again, "why are you here" questions.  And we sit there, and Keith holds my hand, and finally, with a kid that smashed his fingers crying in the background, a doctor with bright blue eyes comes over, and says, "They called about you.  Well, you know why you're here right?  Didn't someone tell you?  You have leukemia."  Just like that.  And yes, so I knew that I "may have leukemia", and maybe it's just semantics, but it was a little indelicately done.  It's a good thing I'm not delicate.

They take me out of my little cubby-hole - deeper into the depths of the hospital, in a kind of holding tank room with a couple of other patients either waiting to be seen and discharged, or waiting to be admitted; waiting for a room, and I wonder "Which one am I?"  I'm the one that's going to be here for awhile.  And that's when the bevy of tests begins.  I can't remember which is first.  I'm thinking the blood test.  Three or four vials again.  (This is my second time today.  My blood doesn't want to come out anymore.  It wants to stay in, where it's needed.)  Then I get an IV.  I pretty much just roll with it.  What else can I do?  This is when my mom arrives.  She's wearing her sunglasses indoors.  Not because she's one of those glamorous women that doesn't want people to know she's been crying, but because they're readers too, and she prefers them to all of her other reading glasses.  Keith teases her, calling her "Ray Charles."  She pretty much just rolls with it.  (This must be where I got it from.)

So we're all sitting there, and the emergency room doctor comes over to talk with us.  He tells me that my white blood cell count was pretty high, it looks like I have something called Chronic Myeloid Leukemia, and that I'm going to need a procedure that they call "leukopheresis".  And here is where my mom, bless her heart says, "No no, wait a minute.  She went to Mexico a few months ago, and she drank the water."  And she is dead serious.  She is holding out hope that all of this - my spleen, my night sweats, my fever, my elevated white count - is caused by a Mexican parasite.  And the doctor says, "No, I'm sorry.  White blood cell counts that high can't be caused by a parasite."  "How high?" I ask, and I'm curious, how high is high?  Normal white blood cell counts range from 4,500 to 11,000.  I find out that mine is 516,000.  Half a million when it should be ten thousand?  Yeah.  That's high.  Dangerously high, apparently.

"What's the deal with this whole lekopheresis thing?"  I have to ask again.  I haven't been listening well.  And he tells me, and it sounds awful.  What the doctor wants to do is put a line in - a tube - so that they can suck the blood out of my body, spin out the white blood cells, and put it back in.  All of this happens simultaneously.  There are three places that they can put a line in.  In your neck, below your clavicle, or in your inner thigh.  None sound good.  The doctor, who I will be hereafter referring to as "The Tiger" (his first name is Tigre, or something, and the nurses jokingly refer to him as "Tiger") is pushing for the neck.  There is a lesser chance of complications and infection if they go in through the neck.  And I must be crazy, because I have a really nice neck - thin and shapely - and I sign the papers and agree to let him put a hole in it.  The rest of my time before the neck hole is kind of a whirl.  Someone brings me a hospital gown.  I guess it's official now.  I have CT scan.  It's unremarkable.  I have a chest x-ray.  Urine test.  And finally they find a room for me with good enough light to cut a hole in some one's neck, in Telemetry.

The Tiger looks pumped.  He looks like he's been waiting all day to cut a hole in someone, and it just happens to be my lucky day.  The kind of lucky day where you find out you have leukemia, and have to have a hole cut in your neck.  I think maybe a colonic would be the only thing that could make this day even better.  (Sarcasm.  And I'm not having one of those.  That is an out hole.)  Someone hands me a mask to wear, and I say, "Really?  Am I contagious?  Are you afraid I'm going to give someone the cancer?"  (And this is how I refer to it, when talking to people, "The Cancer".  It seems fitting.)  And they look at me sadly, and tell me that they're more concerned with me catching something from someone else.  Which shuts me up for the moment.

My poor family. They're with me, and we all go in the elevator that has a door that closes on one side, and opens on the other.  By this time, someone has made the determination that I'm no longer able to walk, and I get wheeled on my bed to my new room.  Which is small and private, and has it's own bathroom, so it seems fine with me.  I'm not a hospital room expert, but I think I've got a good one.  At this point, another someone brings in an ultra sound machine so they can see where to put the line in my neck.  They tent my face, give me a couple of shots in the neck, and apparently it's go time.  My family is outside fretting somewhere.  I imagine my mom outside, wearing her sunglasses at night, and my boyfriend chain smoking, and spitting - he spits a lot when something is bothering him - bouncing from foot to foot.  Holding it together.  For me.  But just barely.  And here I am, with a big blue cloth over my head, holding it together for them.  But just barely.

I feel it when he cuts in, and I know there is blood, but I can't see it, and the Tiger asks me, "How does that feel?"  And I say, "Well it doesn't feel good."  And he says something about being able to feel pain lets me know I'm alive.  And I think, c'mon Tiger, isn't that a little cliche?  And I feel something funny in my chest.  A flutter.  It's tiny, and after a second it's over, and I hear the nurse tell Tiger about it, but he doesn't seem worried.  A couple more minutes, and he's all done, and I have this unwieldy "dongle" sticking out of the right side of my neck.  I'm thinking it's the ends of the tubes all wrapped up to prevent infection, but it's uncomfortable.  It sicks out of the middle of my neck and hangs down almost to my shoulder.  I feel like I can barely move.  Did you know that you use the muscles in your neck to help you sit up?  I didn't.  I do now.

My mom and boyfriend make their way back in.  Keith asks me if they hurt me, and I tell him that I'm okay. It all runs together from there.  I know that my mom leaves, and tells me she'll be back tomorrow afternoon.  Its harder to get Keith to leave.  Its harder to let him.  He tells me later that he's terrified to leave, because he's afraid something will happen to me.  He's afraid I'll die.  Everyone that he knows that's gone into the hospital with cancer never came home again.  But he doesn't say that then, and I don't let him think it.  We'll get through this, and I'll be okay.  He needs to take care of himself so that he can take care of me.  And that finally convinces him that he can go.  I'm so tired, and I usually sleep on my stomach.  I'm hooked up to a heart monitor, have an IV in one arm, and a tube sticking out of my neck.  And I have cancer.  I won't be getting much sleep tonight.

CML - Day One (Diagnosis)

Cancer doesn't run in my family.  We're hearty.  Strong.  Work horses, the lot of us.  Meat and potatoes kind of people, not by-any-means the delicate flowers of the world.  Then, I suppose, there is a first for everything.

I was diagnosed with Chronic Myelogenous Leukemia 49 days ago.  It still feels a little bit surreal.  A cancer diagnosis is a very surreal kind of thing.  Especially for a healthy (well, I thought I was healthy...) thirty-three year old woman.  (I always kind of shy away from calling myself a woman.  I suppose I am a woman, and have been for quite awhile, here, but in my heart of hearts, I think of myself as a girl.  There's something easier about being a girl, I think.  Something less culpable.)

So anyway, here I am, trudging along, and *bam* right in the middle of my forehead.  It all went down a little something like this...

I'm laying in bed on my back, and I notice that one side of my stomach is harder and fatter than the other. Yes fatter.  There is no better way to say it - dresses that I wore 5 years ago no longer fit around my ribcage, and my waist measurement is advancing alarmingly.  I look down and the left side rises up like a little mountain.  And I think, "Oh god, is this what happens in your thirties?  Areas spread and widen, and there's not much of a damn thing you can do about it?"  So I call my boyfriend in for a second opinion, and after much pulling and prodding and similar comparison to his flawless and beautifully symmetrical abdomen we determine, that no, this is not normal.  But not really much cause for alarm.  I look it up on WebMd, and it tells me that I could have a benign lipoma.  For some reason, WebMd is very pointed in telling me,

 "Lipomas occur in other animals, too. They most often affect older, overweight female dogs."

I do not appreciate the comparison, thank you very much.

So I make a Dr's appointment.  I've been meaning to make one anyway, to re-establish care with my primary physician who I have not seen in over 5 years.  In the mean time I worry about my bulge and scare the holy hell out of myself with Internet self diagnosis for about a month.

My doctor is jovial, and friendly, tells me that I have lost a lot of weight (which I actually do appreciate) asks me routine questions, and then as he is gathering up his file, getting ready not to see me for another six months, he asks me, "So is there anything that you wanted to ask about?  Any concerns?"
And me.  Ahem.  "Yes, just this one."  So I tell him about my fat stomach, and he has me lay back on the crinkly paper of the examination table and does some pulling and prodding of his own.  He thinks that I have a swollen spleen and orders 19 different blood tests (yes, I counted all of the little boxes that he marked...there were some that didn't even have a box and got written in), and schedules me for an ultrasound in three weeks.  And I think to myself, "Three weeks?  It can't be serious if I'm waiting three weeks for final diagnosis."  So I take my lab sheet, and my ultrasound appointment reminder, and I leave, and I feel slightly better, because if he's not going to worry, then neither am I!

Except i do.  I worry.  And I speculate.  And I nearly drive myself crazy.  I figure I have mono. At thirty three. The kissing disease at thirty three. (I always was a late bloomer.)  And then my tongue turns white, and I just about lose my mind.  The only thing that I think of that this can be is thrush.  (Which is really gross to me - a yeast infection on my tongue?  Ewww.)  And combined with my large spleen I google that shit and start thinking that I have HIV.  I don't know why I'm thinking that whatever I have has to have something to do with sexual activity, but these are the things that I am alternatively thinking - I'm either the socially stunted thirty something with a teenagers kissing disease, or I'm the stupid slut that's gone and gotten herself an incurable fatal disease.  From one end of the spectrum to the other.

Meanwhile...I haven't done anything pro-active that might actually help to diagnose me, like, say, go and have my blood tests done, but having my tongue turn white is the last straw.  I call my Dr and make a same day appointment.

The speculating is the worst thing.  I'm telling you, it's enough to make you sick, if you're not sick already.  So I slink in there, defeated, really honestly feeling that this is the result of something that I've done wrong, when my physician tells me, bless him, that I do not have thrush, that it is a naturally occurring flora, and to try not to worry, but to make sure and have my blood tests done - which I do.

I'm feeling better.  My doctor told me not to worry.  He thinks I'm healthy, and I figure he's a pretty good judge of that sort of thing.  So I try to go back to normal - back to work - I've been missing way too much work due to health issues.  I'm determined to put this out of my mind until my ultra sound appointment, which is still ten days away.  That plan pretty much goes out the window when later that day I get a call from the nurse telling me that I need to come back in for another blood test.  That my white blood cell count was "abnormal".  And that's all she said.  Abnormal.  Abnormally high?  Abnormally low?  Abnormal, whichever way you look at it is not good.  I decide to go in early the next morning.

When I tell my family they all have widely different reactions.  My mom brushes it off as insignificant.  She is convinced that my spleen is just acting out for no good reason.  My boyfriend is worried, and wants answers to questions that I forgot to ask.  My sister is losing her ever-loving mind, and decides that I have leukemia.  Really?  Leukemia?  Don't only children and old people get leukemia?  And somehow in the midst of all of this I have found a state of calm.  Que sera sera.

I wake up the next morning feeling wretched.  Everything is a struggle.  But I try to keep my routine.  I walk my sister's dog his requisite mile.  I get dressed.  I have to rest while I'm doing it.  I literally have to lean over and put my head down on the bed while I'm doing it, but I manage it.  I pack a lunch and head out.  I have a bit of a drive.  The nearest lab is almost an hour away from where I live, and I have to stop on the side of the road to rest a couple of times on my way there.  I make a deal with myself.  Once I make it, if I still feel like shit, I can call in to work and tell them I'm going to be late, and sleep in the parking lot for an hour.  (This is me cutting myself a little slack.)

Eventually, I do make it, and when I go and pick up my lab sheet, the cat is pretty much let out of the bag.  The notes section of it says "Leukemia/Lymphoma Screening".  And still I'm calm.  Maybe it's because I'm feeling so miserable, or maybe it's because deep down I don't really believe it.

Until...a couple hours later, when the doctor calls me personally to tell me that a hematologist/oncologist will be contacting me to make an appointment.  He believes that I may have leukemia.

And that's when shit gets crazy.


I didn't realize it was such a long story.  More to come.