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.