More Good News...

I've only ever donated blood once in my life.  (And all things considered, knowing what I know now, I hope they poured that bag of it down the drain.)  It was back during my college years, and the blood-mobile would make regular appearances on campus.  One day, I thought "What the heck?  Lets spend an hour doing something nice for someone else."  It did not go smoothly.  Don't get me wrong, it came out all right, but then, as I was sitting in the back sipping some juice, everything went sweaty and black.  I woke on the floor, half jammed under a seat of the bus, clutching my "I gave blood!" pin, in a puddle of orange juice.  Not the ideal experience.

Given that little episode, I was pretty surprised when I received a card in the mail a couple of weeks later, thanking me for my donation, and giving my specimen an A+.  I swelled with pride.  Good job, me.  Until I realized that the A+ was my blood type, and not a grade.

Since that day, I've probably had to have blood drawn for testing over 100 times.  If ever I was squeamish at all, I got over it long ago.  Most of you probably don't know this, but every time they draw blood they ask you if you have any history of problems with blood draws...I lie every time.

So while I've only ever given blood one time, I've been the recipient of it on numerous occasions.  First, in the hospital when I was diagnosed with CML and undergoing leukapherisis (I think that the process pulled out too much of the "good cells" along with the bad.)  Now, once again, over Memorial Weekend they topped off my blood supply.

Pretty sure that my doctor hates me.  Why else would he send me to the emergency room over the Memorial Day weekend?  Oh, yeah, hemoglobin 7.1, and the feeling that my chest was caving in - that's probably why.  My appointment on the Friday before the holiday weekend left much to be desired, as my red blood cell count fell again.  Platelets and white blood cells held at pretty much the same marginally crappy levels from the week before, but the hemoglobin keeps going down down.  Hemoglobin at 7.1 is pretty darn low.  Most people get a blood transfusion at 8.0, but I seem to feel well enough at 8.  Below 8.0 is considered severely anemic, and below 6.5 is considered life threatening.  So at 7.1 I was flirting with disaster.  To be fair, my doctor did try to send me to the hospital to get "typed and crossed" that afternoon, but considering that it was 3pm on the Friday preceding the holiday weekend, everyone at the transfusion center had left for the day.  As my hemoglobin level seemed to be falling .2-.5 weekly, my oncologist did not want for me to have to wait until the following Tuesday to get a transfusion, so he told me to go to the Emergency Room over the weekend.

I tried to get out of it.  Told Keith that I was feeling fine.  But when you're panting for breath after folding a load of laundry, that "I'm fine" line is a tough one to sell.

I completely expected that the Emergency Room would be expecting me.  Thought that my doctor would have made some kind of arrangement to get me in and out fast.  Thought wrong.

When we got there on Saturday, they were mercifully not busy.  There were only a couple of people waiting, and by the time I had signed in and used the restroom, they were calling me back.  I waited in a triage room for about half an hour, when a Doctor finally came over to interview me.  I gave him the spiel.  "I have leukemia.  My hemoglobin was at 7.1 as of the 20th, and instead of waiting until Tuesday to come in for a transfusion, my oncologist told me to come to the emergency room."  Yeah, I don't think that he was listening.  Or else he didn't believe me.  I look pale, but otherwise remarkably healthy for a cancer patient with severe anemia, so he ordered a chest x-ray, an ekg, and a blood test.  I submitted, with a little irritation, fully aware that this little trip was most likely going to take all day.

And it did.  After jumping through most of his hoops - I refused to pee in his cup, but I submitted to everything else -finally my blood test comes back, and the doctor comes up to me, honestly looking a little alarmed, and says that they are going to give me a unit of blood.  My hemoglobin level is at 6.8.  Super.  Make that two and I'll be out of your hair.

He refuses two.  Really?  Depending on height and weight, one unit of blood will generally raise your hemoglobin about 1 full point.  So at 6.8, one unit is only going to get me to 7.8.  Considering that I've been trending down as much as .5 weekly, that will mean that I'll be right back around where I started in a little over a week.  And I definitely did not give up my Saturday to be right back in the hospital again in a week.

So they give me a bed, and they give me a gown (if you're in a bed you've got to wear a gown) and a nice nurse named Jordan puts in an IV, and I wait for my blood.  Did you know that it takes anywhere from 2-4 hours for each unit of blood transfused?  Me neither.  The last time I went through this, getting blood was the least traumatic of everything that was happening to me, so I wasn't really watching the clock.  They hook me up, and everything goes well.  No reactions.  And the pressure on my chest begins to lighten, and my color begins to return.  (I've been looking a little ghostly.)

As the last bits of the bag are pumped into me the doctor comes over and asks how I'm feeling.  "Better," I say.  "It would be nice, if you could give me another unit, though.  I understand if you guys are busy, and you need the bed, but I feel like if I don't get two, I'll be right back in this position next week.  My doctor did want me to have two."  He gives in.  So that'll be another couple hours I don't want to spend there, but I'm considering it the lesser of two evils.  Better another two hours in the emergency room,than another whole day.

They start the next bag at about 7pm.  We've been there since around noon.  Since I didn't have any complications, they were able to transfuse me quickly, and it only took about 2 hours for each unit.  When I'm done, they unhook me, flush my line, and pull my IV.  Dismissed.  Literally.  No escort to the door, no spotter to make sure that I can walk.  That is literally that.

As we walk to the car, I notice that all of my chest pressure is gone.  I check myself in the side mirror, and my lips are actually pink.  While the thought of getting someone else's blood pumped into you is pretty gross, the reality of it is a blessing.

So the past week I've been amazed at how much better I feel.  I can actually breathe deep breaths and my heart doesn't race when I walk out and get in my car in the mornings.  I even took a hike.  A very slow, out of shape, heart pumping hike - but it feels good to be able to exercise a little bit again.

Given how much better I've been feeling, I was a little shocked that my numbers this week were so bad.  Or "sucky" as my doctor called them.  After an entire 12 hours at the emergency room, and two units of blood, my hemoglobin this week is at 8.3.  We were both hoping for something better.  Even worse, my platelets have plummeted to 22, and my ANC has hit an all time low at 699.  If it's not one damn thing, it's another damn thing.

The choices are pretty limited at this point.  Choice one are stimulating drugs like procrit for the low red blood cells and neupogen or neulasta if my whites get too low.  There are some pretty scary risks associated with accepting these drugs, so understandably, I'd like to keep my use of them to an absolute minimum, if at all possible.  Choice two are transfusions.  There are also risks associated with red blood cell and platelet transfusions, like allergic reaction, or contracting something from the blood product that you've been transfused with, ranging all the way from the big scary HIV or hepatitis, to a less scary virus.  And choice three, stopping Sprycel for a period of time to allow my counts to regulate/come back up.  The biggest issue with this one, is that while my healthy cells will hopefully rebound, so will the leukemic cells, and the cancerous cells may once again multiply unchecked.  Like my blood counts, my choices are pretty sucky.

Doctors plan of action for this upcoming week has been to change my appointment to Tuesday, instead of Friday in case I need another transfusion.  That way, one can be arranged before the weekend.  Personal plan of action for this week - soldier on.

Oh joy.

"Down, down, down. Would the fall never come to an end!"  - Alice's Adventures in Wonderland, Lewis Carroll

I Get Knocked Down...

I can't seem to catch a break these days.

I truly expected that my blood counts would have stabilized last Friday, but they all came in even lower than ever before, making it one of my most disappointing check-ups since beginning treatment.  Last week, Keith and I took a couple of walks (he's my regulator- he modifies his much faster pace to match mine, and makes sure that I comply with Doctor's orders, and don't try walk up any hills or anything CRAZY like that), and I felt good.  Felt like I was beginning to recover some of my strength and shake this awful fatigue and shortness of breath that has been plaguing me for the past couple of months - until I tried taking the stairs at the Doctor's office Friday.  (Ok, maybe Keith's right.  When I'm self-monitoring, I can't be trusted.)  Three flights almost killed me.

So I guess I should have expected...I guess that I should have known what was coming.  Hemoglobin (those lovely oxygen carrying red blood cells) down to 7.5.  White blood cell count (my defense against getting sick) down to 2.7 (with absolute neutrophils - cells that protect against infection) down to 810.  Platelets (the ones that keep me from bleeding out when I cut my finger chopping up veggies) down to 39.  All very lackluster - the hemoglobin count very concerning.  So concerning, in fact, that my oncologist decided to give me a shot of Procrit.  

Procrit is a red blood cell stimulating shot.  It's one of the drugs that Lance Armstrong used illicitly to increase the oxygen in his body, and give him a little boost to pedal faster and longer.  "Procrit (epoetin alfa) is a man-made form of a protein that helps your body produce red blood cells."  Sounds good right?  Well, it would be, except for this:   "Procrit can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use epoetin alfa. Procrit may also shorten remission time or survival time in some people with certain types of cancer."  So, yeah, there is that.

Side effects of the Procrit shot - which, by the way, was a stinging little mother trucker that they administered in the fat part of my arm, on Friday - was a headache that came on every time I stood up and moved around on Sunday, and a feeling like I was coming down with the flu.  Both had pretty much passed by Monday morning.  I also woke up with a petechiae rash on my hand, but that is more likely attributable to my low platelets than the procrit.  Petechiae is described as: "Bleeding under the skin that can occur from broken blood vessels that form tiny pinpoint red dots (called petechiae). " This is the third bout of petechiae that I have gotten since Easter.  So far, it has always shown up on my left hand, and has not been severe, so it wasn't exactly panic inducing.  Just another routine f'd-up side effect.  Not pretty, though.

Back to the Procrit.  Procrit has a "black box" warning, which is the strongest warning that the FDA requires for prescription drugs.  They're not sure about the long term effects of the drug, and the Procrit website even states, "Your tumor may grow faster and you may die sooner if you choose to take PROCRIT®."  Living on the fringe, eh?

As scary as that is, to be honest, no one knows the long term side effects of the TKI (tyrosine-kinase inhibitor) cancer drugs that most people with CML are currently taking.  Gleevec, the first drug approved for targeted therapy in CML was just approved back in 2001.  Sprycel (the drug that I'm currently on) wasn't approved until 2006.  So there are less than 20 years or so of research that monitor long term effects.  For all they know, everyone on a TKI could sprout wings and a tail during their 30th year of treatment.  So we are - those of us that are on these drugs so close to their inception - essentially, all guinea pigs, anyway.  Much better than the dismal 5 year survival rate of the past, so thanks to TKI's, at least I'll be alive to witness my transformation into a dragon at age 63.

Here's to hoping for a better week, with better test results on Friday.  In the meantime, know that "I get knocked down, but I get up again, you're never going to keep me down..." - Chumbawamba, "Tubthumping".

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