Down the Rabbit Hole

I've been seeing my oncologist weekly.  Trust me, it's not my idea of a good time.  He's probably getting just as sick of having to fit me into his schedule every week as I am of having to drive up and down the hill every Thursday and Friday.  Every week I have to have have my blood tested.  Today they took 4 vials, last week 1, the week before it was 9.  (It's like they make it up randomly.)  My blood cell counts keep dipping lower and lower.  I could tell at my last appointment that he was torn whether to let me continue to go another week without changing anything, or whether to take action.

Right now, my hemoglobin/red blood cell count is very low.  The normal range for hemoglobin for women is 11.7-15.5.  Mine has been slowly declining from 9.8 to 8.9 to 8.2 down on 5/7/15 to 8.0.  That's on the line of "must take action".  What it means practically, is that I'm severely anemic.  I get a tightness/heaviness in my chest from lack of oxygen.  (Red blood cells carry oxygen to all of your bodies tissues and organs.)  I told my Dr. that my heart was racing while I was hiking last week, and he said "Oh, no!  Don't do that!  No walking up hills!"  Dragging my butt to and from work everyday is almost enough to do me in, and when I try to do extra - like folding laundry, or mopping the kitchen - I can hear my heart pounding in my ears.  I'm getting headaches, occasional nausea, and simple activities like blow drying my hair make me feel worn out.  When I asked how low we're going to go, he said that we can go down to 7.  We'll see if I can still function if I dip down below where I am right now.  He also told me that I was looking very "caucasian".  I think that's his nice way of saying that I'm pale as fu**.  Upside - they did give me a B12 shot last week, and I feel like that helped give me a little energy for a couple of days.

Platelets also continue to be low.  Normal is 140-400, mine are sticking at 46.  Low platelets mean that you bruise easily (no pinching my arms, Keith!), bruise for no reason (hey, where ARE all of those bruises on my hands coming from?), and need to be careful about cuts and scrapes, as your blood may not clot well.

Besides the reds and platelets, my absolute neutrophil count has been low as well.  Your ANC are white-blood cells that pretty much make up your immune system.  My count dipped down to 936 (normal range is 1500-7800).  When you get below 1000 you are at a much greater risk of developing an infection, so it's important to avoid crowds, stay away from sick people, and be alert to any signs of illness.  When I left last week, my doctor gave me his card and told me to call him if I noticed anything unusual.  "Like what?" I asked.  "Like ANYTHING" he said.  This was a little freaky.  My doctor is not usually an alarmist.  I tell him I'm tired, he tells me I'm old.  I tell him I'm getting fat, he tells me I'm a renaissance beauty (not sure if I should be flattered or offended on that one) so when he tells me to call him if I feel weird, I know I'm living in the danger zone.

Keith and I were going to take a small trip for my birthday last week, but with my numbers so sketchy, and me unable to do very much physically, we've had to postpone it until I'm doing a little better.  Stupid cancer.

The one piece of good news that I did get is that they tested my BCR-ABL (cancer cell level) again on 4/30/15 and it has gone down to 12%.  Not only a step - a leap this time - in the right direction.  So at least I don't feel like it's all for naught.  At least I'm suffering for a reason right now!  And like I said, the doctor is confident that my numbers will begin to improve, here, eventually.  He believes that the Sprycel is working well to suppress the leukemic cells, and that it is just taking a little while for my "good" stem cells to realize that they need to kick into high gear, and up their production to make up for the deficit.

Meanwhile, "Either the well was very deep, or she fell very slowly, for she had plenty of time as she went down, to look about her, and to wonder what was going to happen next." - Alice's Adventures in Wonderland, Lewis Carroll

Accentuate the Positive

Numbers are in.  BCR-ABL number is down from 46% to 27%.  So the Sprycel appears to be working to bring my count back under control.  It has also been working to lower all of my other blood cells.  I found out at my appointment that I have pancytopenia - which in short means that my cell counts (my platelets, my white blood cells, and my red blood cells) are low.  What this means practically is that I'm tired, I bruise easily and don't heal well, get short of breath easily, and I'm more susceptible to getting sick.  This happens sometimes when leukemic cells are killed off, and the rest of your stem cells are not producing enough healthy cells yet.  My oncologist believes that this will regulate itself over time.  In the mean time, he is monitoring me more closely, and I have an appointment with him on 04/24 just to make sure that I don't dip into the danger zone, in regards to low blood counts.  As of 04/03/15 my platelets are at 69 (supposed to be 140-400), my white blood cells are at 3.8 (supposed to be 3.8-10.8) and my hemoglobin is at 9.8 (should be 11.7-15.5).  So I'm low all across the board.  He will not be testing my "cancer levels" again at this time.

I've been feeling frustrated with my lack of response and my possible *almost* relapse (when my numbers climbed significantly in January.)  I have found a great site for both info and support.  The Leukemia & Lymphoma Society website lls.org has a ton of valuable information about all types of leukemia and lymphomas, and their CML discussion board is active, informative, and a great resource for anyone looking for information or for anyone that has questions about their diagnosis, their treatment, side effects, or test results.

Current medicine is working.  Yay!  Cancer levels are going down.  Yay!  For the time being I'll try to stay focused on the positive.

In the Wind

So I've officially been on Sprycel now for thirty days.  Oh, the mouth sores.  For the past few weeks my mouth has felt like I ate a box of Captain Crunch, and then gargled with vinegar.  I've had no less than eight mouth sores in 4 weeks.  At the moment, I'm sore free, but I admit to that with reluctance, as putting that out in the universe may be just asking for it.

I've also stopped exercising completely.  My treadmill had a mass failure last month, and although Keith found me a replacement within two weeks, I really embraced the whole "sleeping in" thing, and have not been able to find the motivation, thus far to get back on the proverbial horse.  My energy levels right now are low, and so is my motivation.  Not exactly feeling spry on the Sprycel.  Luckily, with the recent time change, I have enough daylight left when I get off work to exercise in the afternoon.

Not that I do...but I could.

Also, luckily, I no longer feel ravenously hungry ALL THE TIME.  I've stopped eating like a wolverine -both in quantity and quality - (I hardly want meat any more at all...I could easily and happily become a vegetarian these days) so I'm hoping that paired with my newly sedentary lifestyle cancel each other out, and does not add to more weight gain.

So far, I've only been sick a couple of times on the new medication.  I've found that if I eat a carb rich meal before I take it, I feel much better, and can usually stave off the nausea.

According to all of the information that I've been able to gather about dasatinib (Sprycel) the side effects are mostly more mild than those seen with Gleevec, although there is the potential for more serious side effects.  Sprycel can cause both pleural effusion -  a condition in which excess fluid collects in the pleural cavity - and a more serious condition call Pulmonary Arterial Hypertension - which is

"a disease in which the pressure in a patients pulmonary arteries becomes dangerously high and puts a strain on the heart." 

Lets seer clear of either of those, eh?

I haven't seen the doctor to check my numbers...as you'll recall, the last appointment I had, I did not get a gold star.  At the end of January my BCR-ABL cancer measurement was at over 40%.  When you're looking for zero, forty is not good.  It's like getting 40% on a test...40% is a big fat "F" for failure.  So I'm kinda just swinging in the wind, here, right now.  Is the Sprycel working?  Or are my cancer cells growing out of control again?  All will be decided at my next appointment, April 10th.

Tune in for the dramatic results.

May the Odds Be Ever in Your Favor

No one knows this.  It's something that I've kept to myself thus far.  Way back, when the nurse first called me back in for more blood tests, and Lacey thought I might have leukemia, I sat in my bathtub and cried my eyes out, thinking about that Mandy Moore movie, "A Walk to Remember".  (It didn't help that, at that time, Lacey had the song from the movie as one of her ring tones on her phone.)  It's based on a Nicholas Sparks book, and Mandy Moore who is in her teens, dies of leukemia.  So even when I was telling myself that only old people and young children get leukemia, deep down I was terrified.

Firstly, I hate to admit to watching anything based on a Nicholas Sparks book...and second, and more importantly, I hate acknowledging my weakness.  If there is one thing that I've learned since I caught "the cancer", it's that you absolutely HAVE to stay positive.  BELIEVING that you are going to be okay, is absolutely your best and most lethal weapon.  (Maybe, your only weapon.)  It's really difficult, though, because cancer doesn't fight fair, and just when you think you've got it pinned, it flips you on your back.

So, I've been on gleevec since April 04, 2014.  I gained a complete hematologic response, and was working my way slowly, but surely, towards achieving a major molecular response, but something inside me (lets call it cancer) decided not to cooperate, and my BCR-ABL level spiked from 6.8% at the end of October, to 46% when measured on January 29, 2015.  My self checks failed me this time.  Maybe it's because my blood counts - with regards to my white blood cells, and my hemoglobin levels - are normal.  (Huh? How does that work?)  So...I have a normal number of white blood cells, but almost half of them are cancerous?  Talk about not fighting fair.

Not sure if the failure is due to building up a resistance to gleevec, or some sort of cancer cell mutation, but the new plan of attack is a second generation TKI called Sprycel.  I'm still waiting for my pharmacy and my insurance company to duke it out, so that I can get started on my new regimen.  According to my avid web browsing research of the last 72 hours, as many as 30% to 40% of people do not achieve an "optimal response" on gleevec, and are switched to one of the second generation TKI's.  In general, people tend to respond more favorably, with fewer side effects, and with a faster and deeper responses on Sprycel and Tasigna.  So here's to hoping that my non-conformist little body, will tow the line this time.

Oh, wait, make that big body.  Aside from the devastating news that my cancer is making an unsolicited comeback, I also literally tipped the scales last time, weighing in with a total weight gain of 23 pounds.  So, somehow, I got the kind of cancer that makes you fat.  I didn't even know there was such a thing.  I'm just that lucky.

Sprycel, I eagerly await your arrival.  Let's you and I team up and kick some cancer ass!

All Quiet on the CML Front

With three months between appointments, I feel like I don't have much to report on the CML front, but I suppose what I mean is that without blood tests, I don't have any validation or confirmation.  Every couple of days I lay down on the bed, and do a spleen "self exam".  I look down to see if I'm looking crooked - if one side is larger than the other, and I palpitate the area below my left rib-cage to verify that there is no swelling.  A little tenderness, but nothing else noticeable.

As I've mentioned before I start to freak out a little when I haven't seen my doctor in awhile, and start to imagine that I'm falling apart at the seams, and no one is noticing.  Have a become a hypochondriac?  Maybe a little bit.  So, I'm maybe not falling apart.  I'm maybe holding it together, but my side effects have been persistent.  The fatigue is the worst of it.  I'm sleeping 9 plus hours a night, and still feeling exhausted.  With nine hours of sleep and nine hours of work, I'm feeling like all I do is work and sleep, and I take advantage of the weekends to do a little more sleeping.  It makes me feel guilty, and depressed.  Also depressing is the consistent weight gain.  Just over twenty pounds in almost ten months.  I work out 40 minutes, five days a week, and still the scale keeps creeping up.  The fact that I feel like I'm trying to tame my voracious hunger all of the time is most likely the main contributing factor to my expanding waistline - which is hard to acknowledge, and much easier to blame on my medication or my cancer, than take responsibility for, myself.  Damn gleevec, making me fat.

I know that I attach a lot of importance to my weight, and monitor it probably more closely than I should, but it's because it has been a problem issue for me in the past.  At 22 years old, I weighed over 250 pounds...and I'm pretty vehement that I never will again.  Understandably, when the scale starts creeping up, my anxiety level rises with it.

Besides the constant fatigue and fat-everything McGee, I get crippling foot cramping and frequent mouth sores.  The muscle cramps happen multiple times weekly - so much so - that they've sort of become a "normal" nuisance.  The mouth sores come on about twice a month, (just super deep and painful canker sores, nothing more unusual than that) and stick around for almost two weeks.

Blood draw tomorrow, and test results next Friday, February 6th.  They are again testing my BCR-ABL (the protein that triggers the cancer cell production) which was at 6.88 on 10/31/14.  Considering that since almost the beginning of this whole "cancer thing" my appointments have garnered little but good news, I should be able to let my guard down a little, and be more optimistic...and yet...once again...fingers crossed.

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.