Showing posts with label Hospital. Show all posts
Showing posts with label Hospital. Show all posts

Friday, May 15, 2020

Over the Hill, and Through the Woods

You know, I'm actually alright with staying home most of the time.  This "shelter in place" mandate really hasn't changed my life very much, except that I'm back to wearing a mask when I go out again, which is ok with me.  Unfortunately for me, the approval for the Rituxan treatment was approved by my insurance.  And I totally considered putting it off - but it took over two months to secure said approval, and the approval expires in the second week of June.  Since I need four infusions, each a week apart, I made the decision to begin the treatment 3 days after my 40th birthday.

Oh, yeah, that happened last weekend.  I turned 40.  I was feeling a little sad and apprehensive leading up to the day, but with a little reflection, I realized that GVHD notwithstanding, I have a lot of good things to be grateful for, including a family that loves me, a great relationship with a man I adore, a home that I love, and cats that bring me joy every day.  And pizza and chocolate cake.  All told, pretty amazing.
Homemade Birthday Card
I also took a giant leap and colored my hair.  I've been wanting to, but afraid that it was so damaged, that it would just break off or fall out.  I'm pretty pleased with the color results, it looks much more like me; the length and the style makes me feel like I want to speak to the manager, though.

Blonde Highlights

So forty came and went, and then this past week, we headed back down to the LA and I began the Rituxan.  Unfortunately, because of covid19, Keith wasn't allowed back into the infusion room with me, so he literally had to sit in the car or walk around Westwood and wait until I was done.  (Oh yeah, he can walk again.  His cast came off about three weeks ago, but he is still wearing a brace most days, to add some stability.  When he had his accident, he literally broke his leg through his snowboarding boot, so he took quite an impact, and there was probably some soft tissue and maybe tendon damage done as well, as his whole foot and ankle swelled and turned black and blue.  He's getting better, but he still has some rehab to do to get all of his muscles and everything back into pre-tree shape.  When the doctor removed the cast he told Keith, "You know, it's going to take some time, you're not 30 anymore."  To which Keith replied "How dare you."  Them is fighting words.)  Anyway, the first Rituxan infusion is done slowly and the rate slowly increased, to make sure that you don't have a reaction to the medication.  Guess what?  I had a reaction.  

Waiting for them to hang my bag

They pre-medicated me with Tylenol and IV Benadryl, so I was feeling a bit sleepy, but about an hour into it, my throat started feeling scratchy, like I had a small furry tennis ball in it, and I was having a bit of a hard time swallowing.  And when I would swallow, I felt like my ears were closing up.  I don't know if that makes any sense.  I've never had that kind of reaction to anything before.  So they immediately stopped the infusion, and the nurse called an NP to come take a look at me.  It happened to be my regular NP, so that was nice, I got to chat with her for a few minutes, and she already knew my history, and suggested that they give me a shot of hydrocortisone.  Which I agreed to.  Apparently, an infusion reaction to Rituxan is not that unusual, and the protocol is to stop the infusion, if the reaction is not severe, they treat the reaction, wait to see if the issue resolves, and if so, begin the infusion again beginning at the slowest rate, and again building every 30 minutes.  My scratchy throat started to clear about ten minutes after the steroid shot, and completely resolved within about 20 minutes, and they restarted the infusion.  All told, I was in the chair for over six hours.  I'm hoping that the next infusion will go more quickly, but I really don't know.  They might need to play it safe again because of my initial reaction.

So why would I even keep doing this if it makes my throat close up?  The truth is that I don't really have many options left to treat my GVHD.  I've tried most everything, except Rituxan and photopheresis.  They've told me that I probably wont know until after I've had all 4 infusions if it is going to work or not, and quite frankly, the cure so far is almost worse than the affliction.  I feel like I have to at least try, though.  Daily pain is exhausting.  

So we're back on the roads, and UCLA is much quieter, but still not really the place that I want to be in light of the current corona virus events.  But I'm really trying to give this my all, I mean, what other choice do I have, really?  

One down, three more to go.

Friday, October 5, 2018

Day +22 Surreal

Date: 10.05.2018
Time: 8:15pm

HGB: 12.6
PLT: 159
WBC: 5.62
ANC: 2.73

Well, I continue to lose my hair. I thought that I was pretty much as bald as I was going to get, but as I was washing my...head (by the way, what exactly are you supposed to wash your bald head with? Body wash? Shampoo? Mr. Clean? ) A bunch of little whiskery hairs kept coming off on the wash cloth. I have one patch right in the front that is still hanging on, and I'm convinced that if I hadn't shaved it, I'd have a cupie doll curl right in the top front. How attractive.

My face is also filling out and I'm starting to get the traditional "moon face" that usually goes hand in hand with prolonged high doses of Prednisone. I look in the mirror and I hardly recognize myself.  I tried to remedy that somewhat by putting on makeup the other day, but the Tacrolimus that I am on makes me so shaky that I ended up looking like Edward Scissorhands - well bald, fat Edward Scissorhands.

Things continue to go well healthwise, and my Dr. said that I'm doing "so, so, well" when I saw her yesterday.  I feel like a shell of a human being though.  I'm not allowed yet to resume my life in any way that feels even a little bit normal, I look like the marshmallow man version of myself, I barely sleep, and I spend my time devising menial tasks to keep myself occupied.

Friday, September 28, 2018

Day +15 Outta the Joint

Date: 09.28.18
Time: 8:27pm

As of 09.27.18

HGB: 11.3
PLT: 97
WBC: 5.83
ANC: 3.06

They let me out!  Not without restrictions, but they decided that I was doing well enough to be discharged from the hospital to the "hospital adjacent" housing, and Keith came and picked me up on Wednesday night!  I got unhooked from my trusty IV pole, threw on my wig, loaded up my tank top/ lounge pant gear into my mega suitcase, and moved the half a mile from UCLA ward 6East to Tiverton House! 
Not sad to see you go.

Still have my Picc, but at least I'm detached.

My home for 21 days

Tiverton is housing mostly specifically for UCLA medical patient recovery.  It's nothing fancy, but it is convenient.  So I've had two nights now where I haven't been woken up for vitals in the middle of the night.  Two nights of sleeping next to Keith.  Two nights of freedom, where I've been able to walk in the open air and feel the breeze a bit.  (While masked, and sanitized, and extremely careful, of course.) 

The hard part is that I have little to do, except focus on recovery.  I am required to have a caregiver 24hours a day, and required to stay within about 15-30 minutes of the hospital in case anything happens and I need medical attention.  So, it's like we are on vacation in LA, but we are not allowed to go anywhere crowded, I still have dietary restrictions, so I must prepare most of my food myself, and we can't really go too far since traffic is always outrageous.  I have been able to walk outside some with Keith.  We try to go on less busy streets and not during peak hours, and it feels good to try to regain some of my strength. 

So, I'm still very fatigued, still having a lot of taste issues (things taste and smell gross/weird) and generally feeling slightly under the weather most of the time.  I'm 11 different oral medications that I take multiple times a day, and may still have at least one med that I need to get by infusion on a weekly basis (IVIG).  I'm on a huge dose of steroids right now (70mg per day), so I haven't lost more than a few pounds since they make me feel jittery and ravenously hungry most of the time.  They will begin to taper these down, but it's a slow process, they need to do it slowly so that I don't have any flare ups of GVHD.  Until then, at least my mouth doesn't hurt as much anymore and I can actually eat without too much discomfort.

I had my first "clinic" appointment yesterday.  Everything looked ok, including my counts, so they gave me a couple of days off, and I don't have to be seen and or have blood drawn until Sunday.  The clinic is less than half a mile from where we are staying, so I have been able to walk there (with Keith as escort) and hopefully I can continue to do so. 
Tres' Chic
So good things are happening.  Cleared to brush my teeth with a real toothbrush instead of a sponge, able to take showers again instead of baths, unhooked from my dance partner, and reunited with my real partner.  It may be some time before I am released to go home since we live so far away, but for now my quality of life has definitely been improved this week.

Monday, September 24, 2018

Day +11 Wigging Out

Date: 9.24.18
Time: 5:42pm

HGB: 9.4
PLT: 13
WBC: .88
ANC: .15

As you can see I have a few neutrophils floating around in there.  And thank goodness for them.  I've been on iv morphine every 4 hours for the past four days - the pain in my mouth and throat has been so intensive.  Eating half of a peanut butter and jelly sandwich last night felt like swallowing glass.  The neutrophils are going to help me to heal faster so that I can swallow again without immeasurable pain. 

My team of doctors are tentatively excited about these little cells.  The didn't expect to see them on the upswing for a couple of days more, at the very least.  In fact, for the past four or five days they'be been telling me that things are going to get worse before they get better.  I'm hoping they're wrong.

Doing a lot of morphine sleeping, a lot of drooling on my pillow instead of swallowing, and a lot of slouchy hipster hat wearing on my bald little head.

Before I left for the hospital a good friend let me try on all of her wigs.  The short blond is going to be my go-to.  And maybe the long blond when I want to feel a little bit country.  (Thanks Marilyn & Chris.)

Scandanavian Bob
Mad Scientist

Storm of X-Men Fame

Midlife Crisis

Texas Wife

Aside from all that, just hard at work growing cells here.

Thursday, September 20, 2018

Day +7 C'est La Vie

Date: 9.20.18
Time: 7:34pm

HGB: 9.8
PLT: 23
WBC: .08
ANC: 0

I have no hair.
Cancer Style

Lex Luthor Look

It was coming out in strands when I touched it, and getting all over my bed when I slept.  It had to go.  Hopefully it doesn't take too long to come back again.

My mouth and throat are sore and peeling.  Eating, drinking, swallowing pills, hell - swallowing my own spit - hurts today. 

Making it through, regardless. 

Tuesday, September 18, 2018

Day +5 Still here

Date: 9.18.18
Time: 7:55pm

HGB: 10.1
PLT: 19
WBC: 0.28
ANC: 0.1

Well I'm still here.  I still have all of my hair.  I still have cable TV.  I still get my meals delivered by men in tuxedo shirts.  Tonight's entree:

Gourmet Dining

I'm beginning to get a bit of mucocitis, so eating is becoming more and more difficult.  Inside my mouth my inner cheeks are starting to peel, and my throat is starting to hurt, which makes eating and swallowing more difficult.  The smaller the bites and the mushier the food, the better right now. 

I still am keeping busy with my hall laps.  (Trying to keep up three-ish miles per day.)  This weekend I was doing my laps and in a little alcove in one hallway, I kept passing this green peanut m&m on the floor.  I started fantasizing about peanut m&ms, and how I'm on lock down, and don't have any access to peanut m&ms.  After half a dozen or so laps, I finally got closer so I could get a better look.  I don't know what I was going to do.  I certainly wasn't going to pick it up off the floor and eat it.  I think I just wanted to see the printed "M&M" on the shell up close.  Guess what?  It was a green cap like the ones they put on our tubing.  Talk about disappointment of the week.



Probably for the best that I don't go around eating floor M&Ms, as it looks like my blood sugar is elevated.  This is almost certainly due to the Herculean dosage of steroids that they currently have me on.  The steroids are yet another medication to make my body more hospitable to my new cells, and prevent any GVHD flare ups.  Hopefully I can start to taper the steroids before the blood sugar gets out of hand, and I have to start taking insulin.  When I asked about a taper, the doctors told me that won't begin happening until I am released out-patient, so I've got another probably 10-14 days to try to keep a balance.

I'm currently failing to keep a balance with my blood pressure, however, which has been trending up as well.  This is most likely due to yet another medication that they have me on called Tacrolimus.  Tacro is given as an immunosuppressant to, again, make sure that my old body and my new cells get along.  They've started me on a low dosage of blood pressure medication just tonight.  It's most likely temporary, but it's difficult to not have any control over your systems. 

Tomorrow, Day +6 is another big day.  I'll have an infusion of IVIG.  WebMD describes the need for IVIG as:

Your body's immune system normally makes enough antibodies to fight germs that cause infections. But if you have an immune deficiency, your body can't make enough of them. ... IVIg gives you antibodies that your body is not making on its own so you can fight infections.

Tomorrow is also my third dose of mexthotrexate - the "chemo light", so big day on the ol' IV pole.

So we'll see tomorrow if my WBC finally hits the magic number, which is a big zero.  Once I hit zero, the next thing that I'll be waiting for is that number to climb again, which will mean that my new cells will have found their home in my bone marrow and started to grow - a process medically referred to as "engraftment".  It's also possible that I'll need my first transfusion tomorrow.  My hemoglobin is holding steady, but it's possible that I'll need platelets, as they transfuse when your platelets drop below 10. 

Rest assured all.  I'm just doing my thing.  Controlling the things that I'm able to (mouth care, exercise, good personal hygiene) and rolling with it for the things that I can't. 

Tuesday, July 29, 2014

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.

       

Thursday, July 17, 2014

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.

Wednesday, June 18, 2014

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 linePICC 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.

Thursday, June 12, 2014

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.

Thursday, May 22, 2014

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.