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?