Sunday, August 28, 2011

Vampire Life - Blood Transfusion

Fresh blood

My dog can't stop sniffing me.  Clearly, I'm a changed person now that I have somebody else's blood coursing through my system.  When I left the house Friday morning, I smelled like a 53 year old woman whose interests were yogurt, perfume and chemotherapy.  When I came home, a new person walked in.  Maybe I smelled  like a 32 year old man, one who likes Monster Energy Drinks and weightlifting.  Maybe I appeared as a 70 year old woman who secretly needs prunes to get things going.  Maybe a poor person sold their blood, one who lives on cat food.

This new me seems to be mighty confusing to an already confused animal, and she can't stop trying to get a whiff and figure out what the heck happened.

With the loss of her companion last week, there have been lots of confusing changes in the poor dog's life.

As for me - you know how you don't know how bad you felt until you don't feel bad anymore?  That's the state I'm in right now.

How could I have walked around feeling so terrible all of that time?  How did I do it?  How did I get up, go to work, smile (mostly) and get stuff done, feeling the way I felt?

I now totally get why Vampires sink their teeth into innocents, or why the evil mother in Tangled hid the King's daughter in a tree house for 18 years.  Getting a taste of health after being resigned to a life of illness is quite remarkable - a minor miracle.  A fairy tale.

I know one thing - like Vampires or the mom on Tangled, I am going to have to figure out a way to make this blood transfusion thing a regular part of my cancer treatment.

I can breathe normally again.  My heart has stopped beating erratically.  My lips aren't tingling anymore, and I have enough energy to watch an entire TV show without taking a little nap halfway through.  My muscles don't twitch unexpectedly.  My cramps are gone.  I can remember a thought for more than .002 seconds.  The color to my skin has returned and I actually cleaned part of the kitchen, something I hadn't done in a long time.  I spent hours up and doing stuff today, and have energy for more.  So much needs to be done, and now I feel I can do it.

I'd forgotten what that felt like.

I really want to call in to work tomorrow to get long-overdue stuff done at home.

Unfortunately, I don't think you can call in healthy.

The actual transfusion went well.  I was there from 9:00 a.m. to 2:15, not the longest infusion I've ever had but certainly up there.  The photo below was in the infusion center at the hospital which was quite different from the one in my oncologist's office.

Hospital Infusion Center

My oncologist's office infusion room looks like it was decorated by the set designer from the Trailer Park Boys.  This one looks like it was designed by - well, whoever designs hospitals.  The recliners were wipable plastic, easy to clean with alcohol, not corduroy fabric like at my doctor's.  There were no homemade donated knitted throws in weird colors; instead, there were white hospital blankets that come out of warmers.  The floors were shiny and the infusion poles were electronic.

During the five hours I was there, I slept, I emailed,  I watched Big Love on my iPad (free wifi!), I slept again.    They fed me some cream of chicken soup for lunch, and then I took another little nap.  I was really tired, as I am every day.    It's so nice to feel better and it's going to be hard when the exhaustion hits again, which I hope isn't for a week or two.  (Would it be greedy to hope for three or four?)

While there, I discovered that my blood type is A-.  I had thought all these years that it was A+.  I have given birth to two children without knowing I was Rh negative and without getting Rhogam, which is slightly disturbing.

I've never been able to donate blood, but my husband is a regular and has a tee shirt for hitting the gallon mark.  After my experience, I want to thank him, and everybody out there who donates this lifesaving substance so that people like me can feel better for a time.

I especially want thank you for giving my dog something interesting to sniff.  Whatever it is you did, anonymous donor, my dog really likes it.

End of Bag #2

Thursday, August 25, 2011

Good News

This is going to be a quick post, but I can't leave you all hanging!  My PET scan results are in, and guess what?

Wrong!  Guess again.

I had three liver tumors all along!  Somehow, in going over past scans, the hidden third one was found. Where's Waldo came out of hiding.

And, all three have shrunk on chemo.

So, my consult to see if I can have surgery on my liver is in the works.  It will take a couple of weeks so don't hold your breath on that one.

There was some bad news:  I need a blood transfusion.  My reds finally gave up the ghost and are now mere watery pinks.  I've been breathless and tired for a long time and I get a bit dizzy now and then, so they are going to give me a boost.  That happens tomorrow and it takes six hours.  They good news is the transfusion center has wifi so my addiction to Big Love can continue, the bad news is it takes six hours so I had to take the day off.

Cancer is the most time-consuming thing I have EVER done.

The other bad news is my port turned into a one-way port.  Drugs go in, but nothing goes out.  They think probably a fibrin sheath has formed over the end, which creates a little flap.  When things go in, like chemo drugs, it opens.  When they try to suck stuff out of it, like blood, it closes.  Kind of like a heart valve.

Anyway, I have to have a dye study done to see if that's the case - if so, they will give me clot busting drugs to open it up.  It's not a complication I wanted and I was told it was more common when having a port in the arm, so I guess I gambled and lost.  Somebody will surely say "I told you so."    It's not dangerous though, if taken care of.

There is your quick update.

I hope the transfusion gives me energy.  I hear it might.  It would be wonderful if I could actually clean the house and come home from work and cook dinner for a change.

If oxygen gets to my brain, I might even be able to write an interesting blog post again!

Saturday, August 20, 2011

Cancer's Victim

Stoli  - comical dog.   When I came home from work every day, he had to grab a toy first thing.  He would even run away from me to pick up a toy, then run back, very excited, tail wagging.  Then he'd run to the back door to be let out, and as I opened the door, I'd grab the toy from his mouth and he'd fly outside.

He was the messiest water drinker I ever saw.  He loved water, dranks lots of it, would lap it out of the bowl and make huge puddles everywhere.  He would get up, water trailing from his mouth all over the floor.  Our floors are warped because of the amount of water he left there - being working people we had no choice but to leave water out, even knowing the damage he'd do.  I tried everything - a variety of containers within containers, lining the floor with towels and trays, I put steel balls in the bowl designed to make him more delicate - nothing worked.  He was a splash dog.

Oh well, dogs are more important than floors.

Being a greyhound, he was very fast.  I don't know his racing record because he raced in Mexico, but his litter mates were champion dogs in Phoenix.  Stoli was the fastest dog I've ever owned - he could make it around our very large, 1/3 acre long backyard in three bounds.  It was a thing of beauty, seeing him run.

He wasn't allowed on the furniture, but Saturday morning, he would come sneak into bed with me after my husband got up.  I pretended I didn't know he was there.

Stoli was an assertive dog.  He listened to me, and nobody else.  He didn't have the same gentle nature that many greyhounds have  - maybe that's why I think he was a champion.  Oddly though, he always let our other dog Cherry go through the back door first.  She lines up, nose down, in racing stance, waiting for the gate to open and the "We're off!" to sound.  He just went out second, racing days over, toy in mouth.

He was returned to the greyhound rescue once, the previous owners didn't like him and considered him uncontrollable.  I will never understand that - he was a great, sweet dog. They really missed out. They changed his name to "Ollie" too, which explains a lot.  It didn't fit him at all.  They didn't understand the dog.

I just spent the last 45 minutes with him, head on my lap.  He would let out a groan or five.  I don't know if it was discomfort or satisfaction.  Maybe a bit of both.  Maybe he was telling me he was tired.  Maybe he was telling me he wanted a snack.

When my husband got the leash to bring him to his final destination, he jumped up so fast that it made me wonder about our decision.

I didn't go.  My uncontrollable crying would have scared him, and he is scared of vets already.  He and my husband did the walking and the outdoor things together.

He had pancreatic cancer that spread to the liver, obstructing the biliary tracts.  His kidneys were beginning to fail.  The vet said she thought he was too far gone for chemo - that metastatic pancreatic cancer in dogs has about the same cure rate as it does in humans - pretty low.   That photo above was taken six weeks ago, July 9th.  He weighed 70 pounds. He was 50 pounds at his last vet appointment a few days ago.  Cancer took him fast.

He got sicker and sicker but never seemed like he was in serious pain.   He got more lethargic, more weak, but we just now gave him some cheese and he enjoyed that.  I toyed with the idea of letting him die at home, in peace, in his own bed, like I may, but we aren't home all the time and it might disturb the other dog. Plus, although he didn't exhibit outward signs of pain, cancer eating you from the inside probably does cause pain, and why put him through that?  We gave him toredol, drug of choice for vets.  We cancer patients have all taken that and know it does nothing to help with pain - at least for humans.

While in the PET scan yesterday, I had a dream that Stoli threw up on my lap and then looked up at me.  Maybe that was my way of knowing he was telling me it was time.

It is so unfair that as you go through a catastrophic illness like cancer, the animals that comfort you get it too and die when you need them the most.  You see your future and lose your silent companion at the same time.

I have another dog, Cherry, straight off the race track.  We've only had her a few months.  She is very timid and she needed Stoli to help her.  She was afraid of the kitchen for example - she would back away from crossing the threshold.  But when Stoli crossed the threshold, she did too.  She followed him and learned inside dog ways from him.  She is still timid though, and I fear for her (and my stuff - she's a chewer) when she's a lone dog.  We have to work during the day and I don't think she is going to be able to be as calm about it as other dogs.

But, with my health problems, we probably will not be getting another dog right now. It would be an unfair burdon to put on my family.

Stoli, I loved you.  You were MY dog.  You got my disease.

I'll miss you.

Wednesday, August 17, 2011

Today is My Two Year Cancerversary

Cancerversary - A term that still makes me cringe.

I saw my oncologist to find out if my tumors were shrinking and I could move on to surgery. Astoundingly, the two did shrink.

And another one grew.

"Impression: Two previously described metastatic foci improved while there is a new left hepatic lobe focus worrisome for metastatis."

It was a mixed result that puzzled my doctor a great deal. He said you just don't see tumors in one area responding and not responding to treatment at the same time.

Leave it to me to be complicated.

The plan is to have another PET as soon as possible. It's tentatively scheduled for Friday. And, he's still going to set up a surgical consult with an "aggressive" San Francisco doctor. I doubt I can have resection surgery anymore (although I'm not a doctor, who knows?) but they can possibly be ablated. We have to do that before more grow, so there is a time concern. That new lesion is 1.3 cm and grew in six weeks. If I wait a few more months, my liver could be covered with them.

If the PET shows that cancer has grown anywhere else, all bets are off. We looking at pure palliative care.

My dog, too, is facing this disease. He is a greyhound named Stoli. He's been very sick for a couple of weeks and today was diagnosed with pancratic cancer, that has, ironically, spread to his liver. He was 75 pounds; he is down to 56 pounds. We are going to give him his favorite treats for a few days - then let him go. My heart is breaking.

A year ago, on my first "cancerversary" I wrote this hopeful letter to newly diagnosed women who came across my blog.

That advice still stands. I still believe it.

However, on my 2nd cancerversary, I would like to add another thought:

Fuck you, cancer.


Tuesday, August 16, 2011

Choose Your Own Adventure

It's Wednesday afternoon, August 17 - chemo day. Your name is Ann, and you have left work early for the drip, grumbling under your breath about all the things left you want to finish. You are feeling frustrated that cancer is interfering in your life (and the life of your coworkers) to this degree. You leave campus, and the sun warms your skin as you pull your keys from your purse and push the button on the keyfob to unlock your car. At the short beep, you get in your Maserati, rev the engine, and tune your radio to Dennis Miller.

The drive to the oncologist's office is easy, with few cars in your way on the road.  The parking gods smile as you get a spot right in front of the building.

You sign in and plump yourself down on one of the formerly padded chairs. After a surprisingly short wait, your name is called. As you walk to the line of shabby barcoloungers, all of the chemo nurses greet you warmly, but only one will be yours.

Select Maureen to be Your Nurse
Select Joe to be your Nurse

Maureen draws blood and gives the vial to Heather, the assistant. After a few minutes, Heather brings back the blood results, and you are surprised to see that her whites are in the normal range. Unfortunately, your reds have dropped even lower and her hemoglobin is 8.9.

Do you.

Request a Transfusion
Hope Nobody Notices

Heather comes back with a transfusion appointment, and you realize that this is once again going to take you from work for half a day.  You wonder for the thousandth time why these tests and treatments can never be conducted on a weekend.

You shrug and

Play Words with Friends
Read a Magazine

Maureen comes back and hooks you up to the IV pole.  You are getting only Navelbine today, so she flushes your port and starts the pre-meds.  As the decadron drips in, your energy level perks up and you become hungry.

Do you:

Eat a stale donut?
Plan to go out to dinner later.

Joe draws blood and gives the vial to Betsy, the assistant.  The blood results come back in a few minutes, and you are pleasantly surprised to find that your whites are back to normal, despite her lowered leukine dose, and her reds are also in the acceptable ranges.  Whew, no problems here.  Joe asks how your back pain is doing.

Do you:

Complain that its no better
Keep the pain silently to yourself?

Joe looks at you in sympathy and explains that it is hard to get better when you are in pain.  He suggests getting a pain med adjustment from the doctor.  As he does this, he starts your drip, with the IV pre-meds first.

Do you Wait for your prescription?
Do you Talk to a neighbor?

Joe says, "Good, I'm glad you are doing better" and hangs your bag of decadron and Aloxi.

Do you Regret being quiet?
Do you Ask for ativan instead?

Suddenly, the front office nurse comes back and says, "Doctor will see you now." You grab your chemo pole and wheel off to his office, airline tubing trailing behind. You are beginning to get nervous, knowing today is the day you are going to hear the big news about whether chemo is working. You nervously flips through CURE magazine, wondering if that word could ever apply to you.

The doctor comes in, sits down, loads his computer program and says:

Choose C if you want to hear good news.
Choose D if you want to hear mediocre news.
Choose E if you want to hear bad news.

"Good news! The chemo seems to be working. We can find no trace of tumors in your liver.  That's very good news. I'm going to refer you for a surgical consult.

Find out what you'll do next.

"Your tumors have not shown signs of shrinkage, but neither are they progressing.  We can try another chemo and see if we can get a response, and then perhaps still refer you for surgery.

Find out what you'll do next.

"I'm sorry, your tumors have grown, and not only that, but you have several more.  This chemo clearly isn't working, so we are going to try another."

Find out what you'll do next.

You'll deal with it. Because, that is what we cancer patients do.


Sunday, August 14, 2011


Doctors place a lot of importance on whether a patient is compliant or not.  Compliant means doing what they ask, taking your meds at the right time, following procedures, being a good little girl.   I see a lot of anguished posts over at KevinMD by doctors trying to reconcile how best to handle non-compliant patients.

I admit that for the most part, and against my natural instincts, I've been a compliant patient.  I've never missed a single appointment, whether for chemo, herceptin or a blood draw.  I might have taken an extra pain pill if I wasn't getting relief (how can you not?), but even with that, I don't take more than my daily allowance.  I take all antibiotics to the end of the bottle.   I understand the importance of my doctor's request in relation to my health, and so I do the unpleasant thing now for the goal of living longer in the future.

Until the other day.

My white cell counts are again very low.  This chemo, easy as it is on my capacity for functioning, is hard on my blood-making abilities.  So, as instructed, Thursday after work I injected myself with the evil drug Leukine.

I have taken Leukine several times over the course of this disease.  The first time, I had horrendous side effects.    Subsequent injections just gave me flu-like symptoms and so I figured I'd had a first-time reaction. I don't like the drug, and wish I didn't have to take it, but since the side effects have been milder than the first time, I have done it without complaint.

As, I did last Thursday.

That evening, a couple hours after my Leukine injection, as I was watching TV with the family, I started feeling sick.  My muscles started twitching in weird places, and my bones started to ache.  I started to feel nauseated and heartburn scorched my windpipe. I decided I'd go to bed early since I had to work the next day.

As I lay in bed,  I could feel the Leukine forcing my body to begin shoveling out white blood cells.  My bone marrow was like a guy pumping iron with weights far heavier than  normal: every vein was showing, sweat gleaming, that strained look of clenched teeth and wild eyes on its marrow face,  muscles tearing everywhere.

My bone marrow was young Arnold on steroids, not weak-willed, flabby, governator Arnold.

Apparently, my body first likes to make white cells starting from the base of my neck because that area became excruciatingly painful, and of course, gave me a severe migraine.

I got up (still able to do that) and gave myself an imtrex injection.  Slight relief in the head, I realized my body also likes to pump out white cells from the hips, my lower back, my legs.    I was sweating and nauseated and in pain from the effort of my marrow, so I continued to reach for my nightstand pharmacopia.   I took some ativan for nausea and sleep, a pain pill, and a tagamet for heartburn. Then I just tossed and turned, my body a bag of pain, feeling oh, so sick.

So sick.

I really can't describe how sick this drug made me feel.

I had difficulty moving, tied up in blankets I didn't have the energy to escape from,  and as I lay there, I hoped this wasn't what my end would be like. Pure misery.

Hours later, my bed smelled sour, I smelled sour from sweat and pain.  I didn't care.

My alarm went off at 5:45 a.m. and I knew I wasn't going to get up for work.   My iphone by my bed, I sent a text to a coworker "Won't make it in am.  Will try later.  Major pain I can't control yet."

That was an understatement.  At the time though, I was under the delusional thought I might be able to get up in a couple of hours and go to work.  I was hoping I'd feel better soon.  It was schedule pickup for sophomores, and I was needed.    Headache pain being the worst, I took another imitrex shot and I took an imitrex pill also, in the hope relief would last.

No such luck.  I spent the day in agony, sometimes sleeping, sometimes not, always hurting, in and out of a dreamlike state of illness mixed with pain.  Out my bedroom window, eyes slits, I could see a sunny, green day, hear birds chirping, lawnmowers firing, all so far outside my reach I might have been on a different planet.

There was no willing myself to get up and enjoy the day, there was no willing myself to get up at all.  I was trapped in bed by a body that would not cooperate.  I couldn't even pick up a book, or turn on a radio.  I was just a suffering bag of marrow-pumping meat.

The worst part, as I lay there, was I knew I had to do this again.  At 6:30 pm, I would have to inject myself with Leukine again, and start this all over again.  And, (confused about what day it was) I knew that the next day was a day of work I couldn't miss - hundreds of freshman would be showing up, bright, eager and confused, and I needed to be there to help.

I had to be at work.  But, I also had to take the drug that was keeping me from functioning at even a minimal level.

How could I?

How could I not?

6:00 pm, and I finally dragged myself out of bed.  I peed, grabbed some water, and hit the couch.

I was going to take my Leukine, I really was.

But, I couldn't bring myself to do it.

I became a non-compliant patient.  I know my body needs to to fend off the germs of 500 freshman and their parents, (or really - my own internal bacteria - I hadn't brushed my teeth in 24 hours) but I couldn't put myself through that pain and illness two days in a row.

I'm not even sure it would be good for my body to go through that again.

So, I didn't.

The good news was that I was confused about what day it was.  I had been sick through Friday and had until Monday to recover.

So, I waited.  I skipped Friday night's dose.

Saturday night, and Sunday night, I did give myself more Leukine.

But, I cut my dose by half.

I have no idea if it'll work at that dose.   I have no idea if I'll be risking myself being around 500 kids on Monday.   I have no idea why most of the time I don't have problems with Leukine -  but sometimes I do.  And when I do, the problems are unimaginable.

But, what I do know is I can never experience that again.

I will bring this up with my oncologist.

I've said it before and I'll say it again:

I loathe Leukine.

But now, I have a full-fledged Leukine phobia.

Thursday, August 11, 2011

Chemo Brain Revisited

I think I should revisit chemo brain here, although maybe I never visited it in the first place.

I don't know, I can't remember.

I had the strangest experience at work the other day. Apparently, our copier was out of toner. Well, not apparently, I remember that.  A teacher (they are trickling back to work) came and told me, so I went in and got the toner for him, and he put it in.

Or I did, I'm not sure anymore.  I thought it was him.

I remember getting toner all over my hands and washing it off and then going back to work.

The next day, another secretary told me the copier wasn't working.  She laughed about it.  She said it was making noises but if you pounded on it like burping a baby, or like rubbing the belly of dog (I can't remember) it would work for about 200 copies, but then start making a thumping noise again.

So, I called our copier company and requested a repair.

(They are Caltronics, by the way, I highly recommend them.)

The repairman came out within a couple of hours.

I think.

The other secretary and I went in with him,  and he said the toner had been put in wrong.  She explained that together, she and I (mostly I) had taken the other one out, and put in a new one, and it was still making this noise.

He said they'd both been put in wrong.

I looked at her, astonished, copier guy forgotten.   We had?  I don't remember putting in a second toner.  I don't remember her being in the room with me - ever.   I didn't remember that the copier had any kind of problems the day before.  In my mind, the first I heard of it was when she told me that morning and I called the company.

But, that wasn't her experience.  She said we'd both been there and talked about it and I'd gotten a 2nd bottle of toner out, and that is when I'd gotten it all over my hands.  She repeated entire conversations that we had, and things we had done in that copy room, that are not in my head. All all.  Things that never hit a brain cell.

That never happened.

Except, they did.

She has no reason to make it up, and I have every reason to be clueless.

Last time around with chemo brain, I had short-term memory loss.  By short term, I meant I forgot things for a short time.  My boss would ask me for something and I'd forget it by the time I hit my office, (about two steps away) but that was easily solved: carry a notebook and write it down immediately.  If I didn't write it down, it would eventually pop back into my head.

Now I'm missing huge chucks of time, like Tara on United States of Tara.   Permanently, it would seem.

I hope I'm not turning into Buck,  I'm pretty sure he wouldn't fix any copier.

I know that I have also written emails to people twice, thinking I only did it once.  It's a very odd feeling, not knowing what you've done from hour to hour.  It's like my brain is a turducken: a chicken brain stuffed into a duck brain stuffed into a turkey brain.

I sure hope it's chemo brain stuffed into anemia stuffed into exhaustion, because I'd hate to think this is not going away.  Peel off the anemia, and the exhaustion goes away, and then maybe I can get back to normal, forget-for-a second chemo brain and not live in this state of utter disassociation that I am currently experiencing.

I think I'll go have some ice cream.

I like ice cream, right?

Saturday, August 6, 2011


That was my hemoglobin result from my Wednesday blood test. The previous week it was 9.3. You would think that extra percentage wouldn't mean anything. But the difference in my energy level from last week to this one is striking, so like my son would say, numbers do matter.

(Quick note - hemoglobin is the protein in red blood cells that carry oxygen from the lung to the brain and other mostly useful body parts. Normal for me is 12.1, so I'm a lot low.)

The following is what happens when you don't have enough of it:

Your brain, deprived of oxygen, takes at least a week to think something simple like a blog post. You might just randomly post pretty much what everybody sends to you. Not that I would do that because I get some pretty crappy "did you hear about my new site that will help me make a buck off the backs of cancer patient?" emails.... but it's taking me forever to even think how to finish this thought, so I give up. Brain - oxygen = blank.

I get completely breathless when going from bed to refrigerator. It doesn't stop me, because the Coffee Heath Bar Crunch ice cream is in there, and its call is most powerful. But by the time I open the freezer door, I'm puffing like a 95 year old women who spent her life smoking unfiltered Camels. Then I get so winded eating 1/3 of the container (400 calories according to my calculations) that I have to shuffle back to bed to go sleep it off. When I wake up, of course, I'm drenched and steaming due to daytime nap night sweats, so I have to drag myself to the freezer again to cool off.

Life is difficult right now, mostly because my local store keeps running out of Coffee Heath Bar Crunch.

Once I had to resort to Vanilla Heath Bar Crunch, which is not the same.  At all.

My lungs aren't the only organs gasping for air. I read a great breast cancer story about a woman who had craving for lettuce, eating four heads a day, which helped her puzzled husband diagnose her breast cancer. There was this fantastic quote,

"It’s only now that I realise my body was making me eat lettuce to combat the cancer," Elsie, now 59, told the Daily Mail. "It was like my body was trying to cure itself."

Now, normally I would have a field day (ha ha) with the thought of lettuce diagnosing cancer, and somebody's body making them eat it "for the cure", (don't sue me Komen) but all I can think of right now is I hope Coffee Health Bar Crunch can't do the same type of diagnostic thing, or I'm in much worse trouble than I thought.


Self-check is important

For everybody.

From my new favorite website.