Day 9

That's the laxative - called GoLYTELY.  You drink it (4L of fluid) and get ready for one hell of a poop. It did wonders, I haven't had a good BM since I got in the hospital.  What a way to start the new year.  Now I'm super hungry!  I think I'll order chinese, ha.

Counts for today:
Hg 9.0
WBC 0.1
Platelets 16
Creatinine 1.07

Nothing else to report.  Have a great New Year's Eve.  Dietz rounded up some noisemakers and my nurse found some donated poppers, so we're gonna have a party in my hospital room.

Day 8

Counts:
Hg 9.3
WBC 0.2
Platelets 24
absN N/A
Creatinine 1.00

Today I felt pretty good, the vampire diet yesterday helped with that.  I'm still plugged up though, so tomorrow they're planning more drastic measures to get things moving.  My belly's starting to distend so I think it's time.

Dr. D'Cuhna stopped by today, he just wanted to make sure my doctors aren't over-reacting to these fluid pockets I have where my left lung used to be.  Before I began chemo I had a CT scan.  The radiologist who read the scan saw the pockets and was concerned they were harboring infection.  He then recommended in his report to my oncologist that they be drained and cultured.  This got my oncologist all concerned since pockets of fluid breeding infection in a chemo patient is dangerous news.  These pockets, however, are normal for two months post-pneumonectomy.  Dr. D'Cuhna has been viewing my CTs and feels they're nothing to be concerned over at this point.  If there was infection it "wouldn't be subtle" and an attempt to drain and culture them would most likely lead to infection.  My pulmonologist concurs with Dr. D'Cuhna, and once my oncologist explained my surgical timeline to the radiologist he changed his recommendation.  So we're all on the same page.

Last day of my steroid treatment was today.  Tomorrow they should switch me completely back to my pump.

Day 7

Counts:
Hg 7.5
WBC 0.5
Platelets 34
absN 0.5
Creatinine 1.07

I received two blood packets today because my hemoglobin was low.  This means I should have more energy tomorrow than I did today.  I'm less constipated tonight but there's room for improvement.  I'm still pleased that I have no nausea or other side effects.

Tomorrow will be my last day of my anti-nausea steroid treatments, so hopefully I'll be off the insulin drip (no more hourly glucose checks!) and completely back on my pump.  My fingers need the break.

Day 6

My counts for 12/28:
Hg 8.4
WBC 0.8
P 51
absN N/A
C 1.06


Another sleepy, constipated day.  I spent most of it sleeping, then Kathleen and Dietz came to visit and the Vikings lost.  I'd feel great if my bowels were moving.  Hopefully that'll change tomorrow.

Day 5

Every morning I have blood drawn and am given my "counts" for the day - the levels of cells and cellular products my doctors watch to monitor my progress through therapy.  I decided to begin including these values in my posts.  Here is a brief explanation:

• Hemoglobin (Hg) - The total amount of the oxygen-carrying molecule found in red blood cells.  Given as grams per deciliter (0.1L) of blood.  Normal is 13.3-17.7 g/dL, mine usually hangs around 11 g/dL.  Low values cause sleepiness.
  
• Total White Blood Count (WBC) - The absolute number of white blood cells circulating, given as an integer times 10^9 cells per liter.  Normal is 4.0-11.0 x 10^9/L.  Low values indicate a compromised immune system, high values indicate current infection.
  
• Platelets (P) - Absolute count of the blood-clotting agent, given as an integer times 10^9 platelets per liter.  Normal is over 100 x 10^9/L.  If the platelets are too low (<10 x 10^9/L) blood won't clot and a transfusion is necessary.  If it is too high (>500 x 10^9/L) clots can form spontaneously.
  
• Absolute Neutrophil Count (absN) - a count of neutrophils circulating, given as an integer times 10^9 cells per liter.  Normal is 1.6-8.3 x 10^9/L.  The lower this number, the less able my body is to fight infection.  Anything <1.0 x 10^9/L is considered neutropenic.
  
• Creatinine (C) - A chemical biproduct filtered by the kidneys, given in milligrams per deciliter.  Normal is less than 1.25 mg/dL.  I need to stay under 2.0 mg/dL to be eligible for marrow transplant.

My counts for 12/27:
Hg 8.6
WBC 2.0
P 62
absN 3.0
C 1.31

Tonight I received my last dose of chemo.  Still haven't felt much nausea.  Eyes remain poor and glucose continues to be well controlled.  My temperature is consistently normal (which means no uncontrolled infection), my blood pressure down (I had difficulty with that last time), and my percent oxygen saturation in my blood is always around 100% (meaning my lung is efficiently exchanging oxygen and carbon dioxide.  This would be down to 90% or lower if I was struggling with a pneumonia). My hemoglobin is down today so I felt tired, but my doctors aren't surprised that it's dropping.  Platelets, red blood cells (and thus hemoglobin), and white blood cells are all produced from the same stem cells, and all three will drop due to the chemotherapy.  I'm also constipated but my appetite remains well.  I guess I'll just keep cramming it in.

Day 4

If I have learned one thing from extended stays in hospitals it is this:  no news is good news.  Because unless you're being discharged (the best day ever) it means you're having more procedures done, and 'nothing' is better than a procedure.

Today oncology and endocrinology were here for about five minutes each.  The only complications I have from treatment so far are the eye problems and the high glucose associated with steroid use.  As for the hyperglycemia, I'm happy to report it stayed under control all night.  However, I seem to have the most difficulty controlling it during the afternoon and evening, so we'll see how tonight goes.  I think I need to adjust my carb ratios (how many units I give per gram of carbohydrate eaten) due to the steroid treatments.  I finished lunch at 1145 and I'm already up from 152 at 1200 to 250 at 1300.

Suk, my nurse, just came in and I discussed the idea with her.  She's on board.  She's always so sweet to me.

So I took 4.3U correction at 1310 and will check my glucose in an hour.

My eyesight remains poor, but I am still able to use a computer.  Reading words off the TV is tricky.  I receive eye drops (another steroid, of course) every four hours to help protect my eyes from the chemo, but an improvement has yet to be seen (pun definitely intended).  By 31 December I will have finished with chemotherapy and the majority of the hazardous waste will have flushed from my body. As I'm told by oncology, my eyesight should begin to return.  If not I'll be considered for further treatment.

I am encouraged by the treatment so far.  I still feel healthy.  My ability to get out of bed, take a shower, and walk around the hospital amazes me, as it was never like this before.  The challenge will be remaining this way once my counts are down.

I love visitors, even if it's someone to just sit and watch TV.  Or calls, my room phone is 612 273 0729.

And To All A Good Night!

So my nurse asked my endocrinologist about bolusing for meals.  His response:  we're not used to patients on insulin drips having much of an appetite, so bolusing for what is being eaten is a great idea.  I got this news after having a late lunch, so I again spent my afternoon and evening in the mid 300's before it came down.  I ate a late dinner again and bolused appropriately.  We'll see how this treats me tonight.

Overall I've been feeling well.  I get out of bed and move around my room without any problems, although tugging around my IV pole is annoying.  Today IRael and I walked four laps around the 7th floor, my goal is to make it to ten laps total throughout the day.  It feels good to get out of bed and do things for myself.  Other than the high blood glucose I am not having any nausea or other side effects yet, but they tell me with Citarabine that typically comes later.  I just want to be sure to get as much exercise as possible while I can to keep my strength up and lung clear.

My doctors are fairly certain there is fungus growing in my right lung.  I'm on antifungals to treat it and they tell me as long as I'm asymptomatic they don't plan to treat it any different.  I haven't had a fever, cough, or difficulty breathing, but my CBC is still up.  Hopefully once this goes I won't have any additional advancement of the infection.  It makes me realize how incredibly sick I was when I was first diagnosed.  I think of all the precautions I take now (constant hand washing, wearing a mask when leaving my room) to prevent infection, I can't believe I was so careless this summer.

Today I had breakfast with IRael, spent the afternoon playing Uno and watching movies with my family, then walked the rounds with IRael before he headed home for the night.  I am so fortunate to have such a devoted and loving boyfriend, a family willing to drive through a snowstorm to be together for the holiday, and the constant thoughts and warm-wishes from friends and strangers alike.  I cannot convey my gratitude to everyone who is pulling for me, and I hope your holiday was a good one.

I just checked my blood sugar: 150.  Bingo.

Day 3

Yesterday was stupid.  Wednesday night they gave me a "low-dose" steroid to prevent nausea.  I told them my diabetes reacts badly to steroid (a common side-effect).  They say to wait and see how I'll react since it's supposedly "low-dose".  My pump wasn't able to keep up with my insulin needs and my glucose levels climbed into the 500's.  I finally switched to an IV insulin drip around 1600.  On the drip, my basal topped out at 16 U/hr (my pump stops at 2.5)! It lowered my glucose to 80 around 2030.  IRael and I ordered a big chinese dinner and I got another dose of steroids.  My glucose topped out around 350 overnight(no thanks to a bag of sour patch kids I ate around midnight) but was in the 100's by 0930.

So today I finished brunch at 1145 (2 U/hr), I get a glucose check at 1200: 156.  I stay at 2 U/hr until my next check at 1300.  Right now it is 1247 and I'm already at 207.  The drip is set up solely as a basal system (a certain dose is given as units of insulin (U) per hour).  I want to use a bolus system, so when my glucose levels are in normal ranges (80-140) anything I eat would be covered by a proactive bolus instead of waiting and adjusting.  I called my nurse and switched my rate to 6 U/hr at 1253.  She agrees with me but is informing my doctors, so we'll see what happens.  The drip also uses Regular insulin (switches to active form 40 minutes after injection and is metabolized completely by 6 hours) but I wonder why I don't use Humalog insulin (activates within 5 minutes and is metabolized within 2 hours.  Hopefully the doctors can stop by and I'll ask them.

Yesterday my vision really deteriorated.  Blurred vision is a common side effect with Cytarabine, but I worry it will lead to another permanent deterioration.  I think the high blood glucose I had yesterday played a factor, too.  It has now become difficult to see in my entire field of vision.  The nurses administer eye drops to me every 4 hours to help prevent dryness and chemical damage from the chemo.  Hopefully things will improve once the Cytarabine stops.

That and I lost my poker.  I hate switching to a new one.

My family just arrived so you'll get another post later.

Merry Christmas.

Here We Go Again

I'm coming at you live from the University of Minnesota - Fairview Medical Center.  I was admitted this morning around ten.  Since then I've been sitting around my room, talking to my different doctors as they come into the room.  Everything is just as I remember it:  the view from the window, the smell of the room, and (unfortunately) the menu I'm allowed to order from.

I just started the first drug of my chemotherapy cocktail.  The regimen is called FLAG and consists of three drugs:  Fludarabine/ARA-C (Cytarabine) and G-CSF (Filgrastim).  Fludarabine is administered via IV over 30 minutes.  Cytarabine is infused over four hours, starting four hours after Fludarabine.  Filgrastim is given as an injection.  All are given for five days.  The major side effects are nausea/vomiting, skin problems, vision changes, headache, and kidney and liver complications.  The cocktail will cause my immune system to temporarily stop producing cells (called neutropenia), which will make me susceptible to opportunistic infection for about a month.

I suddenly have lots of time on my hands,so I welcome guests anytime.  Just please don't visit if you are ill or in close contact with someone who is.  I am in room 7D-503.

Stuck in the Middle

They had just finished placing me into position on the machine when the phone rang.  It was Wednesday and I was having a bone density scan as part of my pre-transplant work up.  "We're gonna stop the scan," the technician told me as she hung up the phone, "they say you don't need this test anymore."  Weird.  She then instructed me to head to the transplant center where they'd be expecting me.  My mind began to race as I changed back into my clothes and walked to the clinic, wondering what this was about.  I had an awful feeling, do they typically cancel tests for good news?

When I arrived at the clinic I was shown right into an exam room and my oncologist entered before I even had my jacket off.  She sat down, took a deep breath, and said she had received the results from the bone marrow biopsy I had the day before.  "I'm so sorry Nicholas, but your leukemia has returned," she said, but had already figured it out.  You don't receive treatment like that at a clinic if something isn't terribly wrong.  She explained that the transplant and all remaining tests were cancelled and I would meet with her Friday to discuss what would happen next.

The biopsy showed 75% blasts, or that 75% of the cells pulled from the marrow were cancerous (compared to almost 100% when I was diagnosed and <5% to be considered in remission).  The cancerous cells have not yet begun spilling out into the blood stream (a good thing) and I am still producing healthy immune cells (another good thing), but the aggressive nature of my cancer means that the doubling time (the time it takes for the number of cancer cells present to double) is relatively short and it probably won't be long until my marrow is unable to produce healthy cells.

So I met with my oncologist yesterday and she laid out my options.  I'm not eligible for transplant while relapsed, so if I choose chemotherapy the goal is to pick a chemo cocktail strong enough to put me in remission once again but not so strong it destroys my kidneys.  I am also at an elevated risk for infection while undergoing chemo since the cavity where my left lung used to be is now a perfect petri dish.  Without an immune system to take out pathogens, my doctors are worried I'll contract a fatal infection, or residual spores from the fungus will infect my only remaining lung, or I'll catch a hospital-acquired infection, or something else from a long list of complications.  When I was diagnosed everything happened so fast and I was so sick I didn't really understand the gravity of treatment via chemotherapy and all the risks involved - I just did it because it needed to be done.  This time I had to sit in an office and listen to my doctor explain what felt like a hundred different ways this could kill me.  I understand it is important that I understand the treatment and the risks involved, but what a mind fuck.  It makes me question if this is indeed the right thing to do.  But what other option do I have?

My doctor offered me hospice, that I could spend my last christmas at home with my family and living free until the end.  Not having to go through the pain of chemotherapy or risk dying in a hospital bed while suffering through constant nausea and mouth sores.  Being able to sleep in my bed and eat my favorite meals... to taste again what life was like before this awful disease, but always knowing my train was quickly running out of track.  I can't say it's not tempting.  The idea of normalcy, even in part... That's what I want more than anything.  I can't remember what day-to-day life was like before cancer.  Knowing hospice could offer that to me makes it hard to ignore.  But then I consider what I wanted to get out of life:  to become educated and turn that education into a meaningful career, to find the love of my life and start a family, to teach my children and watch them grow, to own a house, to buy my dream car, to see the world, and to die old and complete, knowing I had been given opportunities to reach my potential.  But hospice leaves no room for any of that, and although cancer may rob me of my dreams in the end, how can I simply give up?  It is unacceptable, and thus I am left with the one option.

I'm supposed to call my oncologist Monday morning with my decision on treatment.  I guess I know what I'm gonna do, I've just never been so unsure of something.  I guess I'll just continue to do what needs to be done.

The Real Cost of Prescription Medications

I always hear about Target or Wal-Mart advertising generic prescription medications for $3.99 for a one-month supply.  Out of curiosity I decided to look at the list of eligible medications, wondering how much money someone like me could save by switching to generics.  Out of all the medications I have had prescriptions for since being discharged from the hospital (about 15 drugs total), only one appeared on the $3.99/month generics list.  I didn't have much hope for my meds being on the list, but I guess I figured more than one would be.

Here's an example of what I am charged for some of my medications:

• Caspofungin - an IV antifungal, $810.50 for a single dose.  I've taken one dose daily since August 4th.
• Amphotericin B - an IV antifungal, $3552.00 for a single dose.  I took one dose each day from August 4th thru early September.
• Aranesp - a growth factor used to stimulate hemoglobin production, $382.32 per dose.  I've taken one dose every two weeks since October 1st.
• Dronabinol (Generic Marinol) - an appetite inducer, $17.34 per day since August 4th.
• VFEND - an oral antifungal.  $146.91 per day, I was on it for about four weeks.

Of course not all my medications are this expensive.  I am fortunate to be on medical assistance, which has no copays.  I don't know what I would have done if I had worked for a year before being diagnosed and not qualified for medical assistance, or had to pay copays.  A 5% copay on all my medical services so far would have cost me about $75,000.  And this is before my transplant....

I wonder what my medication bills will look like once I start immunosuppressive therapy.

History, Part III

My first round of chemo produced a lot of complications, but I didn't feel many of the side effects from the actual medications.  Yeah, all my hair fell out, I was nauseous some days, and all my energy was zapped, but considering what else was going on these things were pretty manageable.

When I was first admitted to the hospital my bone marrow was 100% blasts.  This meant that when a sample of my marrow was examined under a microscope "all" the cells visible were cancerous.  My first round of chemotherapy brought the percentage of blasts to around 10%, with remission considered to be >5% blasts.  So the first round did a lot of work, but I needed more chemo.

By now it was early July.  My immune system had recovered from the first round of chemo and was able to fight back the fungus to the lower lobe of my left lung.  But now we faced another problem:  how could the fungus be kept under control while I underwent more chemo?  It was clear from the first time that antifungals alone weren't enough.  I needed white blood cells to keep it in control.  So it was decided that I would receive transplanted white blood cells, a daily transfusion, to supply the necessary weapons while my body couldn't produce its own.  And it worked wonderfully.  The fungus was kept under control through the entire second round.

Again chemo consisted of two drugs given over a week starting in early July.  I forget what their drug names were but one was called "Smurf juice" because it was bright blue.  Most of the details are fuzzy, but IRael tells me that since the first round didn't put me into remission the drugs chosen for the second round were much stronger, thus hopefully avoiding the need for a third round.  It worked, I guess, I didn't need a third round, but they weren't kidding when they said the drugs were stronger the second time.

I didn't have much hair left to fall out, but it took until September before it really started growing again.  Which didn't bother me too much, I didn't have to shave for 8 weeks!  And it has since come back with a vengeance.

It also took until September before I stopped puking every morning (no exaggeration).  No matter what I did or what anti-nausea meds I took, as soon as I tried to get up for the day I would spend ten minutes next to the bed dry-heaving bile.  It was awful, I felt like I was pregnant.

My sense of taste changed for many foods after chemo too.  I used to eat four quarts of cottage cheese a week before I got sick (it was my favorite!), now I don't eat any.  There's just something about it, it's not the same.  Or this peanut sauce I eat with rice (my other favorite!), couldn't touch the stuff for about two months.  Like the sauce, most foods' tastes have returned to normal, but there are some things, like cottage cheese, I just don't like anymore.

Sure, the taste change and losing my hair was annoying, and throwing up isn't a great way to start each day, but the worst part of round two was the mucositis I had during July.  My entire mouth was a giant canker sore.  The tissue starting from the back of my teeth all the way down my throat and tongue was completely raw; the chemotherapy had killed all these fast-growing cells.  I couldn't talk, I couldn't eat, I couldn't even open my mouth and I looked like a chipmunk from the swelling.  They couldn't give me meds strong enough to ease the pain and the sores lasted several weeks.  The nurses did give me a yonker - a hard plastic tube hooked up to suction that I used to clean the sores.  I would sit for what felt like hours and just suck dead tissue, blood, and other crap out of my mouth.  It felt amazingly good and was the only relief I could get.

Now imagine throwing up with sores like that in your mouth.  Yeah, chemotherapy sucks like that.

The sores (and probably chemo) also messed up my GI tract.  I couldn't eat so I was given IV nutrition called TPN.  Once the sores healed the doctors wanted me to start eating again... easier said than done.  Nothing tasted good.  Nothing smelled good.  Nothing even looked good.  I would take a couple bites and my stomach would get upset.  My body had become so un-accustomed to food it took a few weeks of trying my hardest to eat before I was able to stop TPN.  Getting out of the hospital (and back to REAL food!) was probably my biggest motivator to eat :)

I ended up back in the ICU once during July.  I was diagnosed with a Vancomycin-Resistant Enterococcus infection in my right lung.  Since my left lung was so compromised by the fungus it didn't take much for the Enterococcus to impair my breathing.  I was pumped full of antibiotics and was out of the ICU within a couple days.  Because it was an antibiotic-resistant microbacterium I was placed under contact restrictions - anytime a nurse, doctor, or hospital worker came into my room they had to wear a disposable body cover that they would then remove as they exited the room.  It was funny to see an entourage of doctors suiting up each time they'd come in the room.

July wasn't all bad, however.  By the middle of the month my kidneys had began to function well enough that I no longer needed dialysis.  The chemo was successful, bringing me to 0.3% blasts, well below the 5% cutoff rate for remission status.  Very good news indeed.

I was finally discharged from the hospital on 04 August 2009, 65 days after being admitted.  I continued TPN at home for about a week before I was eating enough by mouth that the nutritionist felt comfortable removing the TPN.  I also continued two IV antifungals, caspofungin and amphotericin, and had a slew of pills to take.  I had lost about 40 pounds, most of which was muscle.  I got tired really fast and still spent a lot of time sleeping, but I was happy to be out.  I was able to go outside, see my friends, eat whatever I wanted, and sleep in my own bed...all things I missed dearly while in the hospital.

August brought lots of doctor appointments and slow recovery, but recovery none the less.  By September I was feeling pretty good.  All the nasty side-effects from chemotherapy had resolved and I was able to resume many of my normal activities.  But my kidneys were still a real issue, their function levels fluctuated as the doctors wondered how much damage they actually took.  The fungus was still around too, but its days were numbered.  It would soon encounter a force it couldn't reckon with - the scalpel.

A Waking Dream

The pain meds I was on gave me such vivid dreams.  IRael has told me stories of things I would shout in my sleep, or the conversations I would make when people tried to wake me.  It makes me wonder what was going on in my head during all this.

I remember dreaming I was working at Target and I kept thinking to myself, "I need to get back to the hospital" instead of being at Target.  No one there could see me though, I was kinda like a ghost.  I would stock products onto the shelves and keep thinking "ok, I'll stock this one last item, then I need to return to the hospital, my boss will understand..." but I would just go get more products to stock.

The other vivid hallucination I remember was once when I woke up I looked up and near the foot of my bed there was a man standing there.  I think my mom was in the room with me, but I couldn't see him the way I could see her.  He was like a shadow, faded, almost indistinct.  He was looking down at the floor near his feet and his arms were by his side.  He had long hair that hid his eyes from me.  I asked my mom who it was and she told me there was no one there.  At that point he started moving away from the bed towards the wall.  I held out my hand and told him not to be afraid, that he could come talk to me if he wanted.  But he didn't say anything, or change the expression on his face, or change his posture.  He just backed up to the wall, becoming more like a shadow, until he disappeared completely.

I have never had a dream feel so real.  I don't believe it was anything besides a dream, a hallucination.  But it felt so real, that I could reach out and touch him.  The power of the mind amazes me, that it can make something out of nothing and then convince our consciousness it exists.

History, Part II

This is an account of what I remember during my stay in the hospital.  This is how I remember things being explained to me.  Especially during the first few weeks of my treatment I was horribly ill and often unable to make my own decisions regarding my care.  The pain medications I was taking gave me such vivid hallucinations I would babel nonsense while I slept.  My family will have a different take on what I went through, but here is my account.

Chemotherapy sucks.  Not that this is new and surprising information for anyone, but I had never seen someone go through chemo in my life.  Unless you go through it yourself or live with someone day-to-day who is going through it, there is no way to know how awful it can be.  The whole point of chemo is to destroy fast-growing cancer cells in your body, definitely a good thing.  The problem, however, is that it not only kills the cancer cells but many other types of fast-growing, healthy cells.  The cells lining your entire GI tract (mouth, esophagus, stomach, and intestine), hair follicles, skin cells, and immune cells can all be wiped out by chemotherapy, causing all sorts of major problems and discomforts.

A week before I went into the hospital I took a trip with my family to my uncle's house in Wisconsin.  While I was there I developed a sharp pain on my left side whenever I coughed.  It felt better after a few days and didn't think much about it.  Once I was admitted it was clear this pain was because of an infection.  Aspergillis, a common fungus, had established itself in my left lung and, because my immune system was full of non-functioning cancer cells, my body was unable to effectively fight it.  I was started on a bunch of different antibiotics and antifungals to fight it while I was undergoing chemo (since chemo would wipe out my immune system).  One of the antifungals was Amphotericin, the best antifungal out there.  It was terrible to have to take.  Besides being toxic to the kidneys (more on that later...), it would cause rigors.  My entire body would shake uncontrollably and I would feel like i was freezing.  The nurses would wrap my entire body in eight or ten hot blankets hoping to make me comfortable.  I took it every day for about three months.  At first the rigors were terrible, lasting twenty minutes or so, but by the end my body had become used to the medication and they usually didn't happen at all.

I went through two rounds of chemo - the first one I don't remember very well and the second one I do.  My first round, in early June, was two different drugs taken over seven days.  My CBC quickly fell from 100,000 to almost zero and the infection in my lung began to spread.  I slept a lot and must have had a lot of discomfort because this is when I was taking all the heavy pain meds.  My memories are hazy, but things got worse quickly.  I remember going for lots of different procedures.  They were having a hard time identifying the fungus in my lung (and thus didn't know how best to treat it).  They did a procedure to remove fluid from around the infected lung.  I think they took out a liter or two, which helped me breathe easier.  They did another procedure where they put a tube into my lung and flushed saline around in an area to try to capture spores which they could then grow and identify.  It didn't work.  And the fungus kept growing.

Then my kidneys began shutting down.  I think it was due to all the stress from the medications I was taking in tandem with the job of cleaning my blood from all the remnants of the cancer cells.  So I had to go on dialysis, which meant I had to have an access port put into my neck.  I had to go down to a procedure room to have it put in.  While I was there I kept breathing more and more quickly and my heart rate kept climbing.  I remember the nurse kept telling me I needed to calm down and breathe more slowly.  I couldn't, I didn't feel anxious, I just couldn't breathe.  The doctor putting in the port kept asking how I was doing and the nurse kept responding "not well".  Then everything just disappeared.

The fungus had spread from the bottom part of my left lung into the entire left side and began infiltrating the right.  I felt like I couldn't breathe because both of my lungs were so clogged with fungus that enough oxygen exchange wasn't occurring - I was suffocating.  So my heart kept beating faster and faster, trying to get enough oxygen to the blood, but it just couldn't keep up and I passed out.  I don't know exactly what happened next but the port was installed, I was put on a ventilator, and was taken to intensive care.  I was kept unconscious while the ventilator was in and I went through dialysis.  IRael told me later that the doctors gave me a 10% chance I would survive the multi-system organ failure and a 5% chance I would ever get off the ventilator.

They underestimated me.  I think I was on the ventilator three days before it was removed and I could breathe on my own again.  I stayed in the ICU for maybe another couple of days before I was transferred out.  By this time my immune system had began it's slow recovery and started fighting off the infection.  The next couple weeks were full of more strong pain meds, dialysis, and lots of coughing, but it seemed the worst was over, at least for the time being.

History, Part I

IRael took me to the emergency room at the University-Fairview Hospital on Sunday, 31 May 2009.  I had been feeling ill all day and had a temperature of 103˚F.  I had been feeling pretty well until that day, except for a cough and feeling a little run-down.  I had just graduated from college the week before, so I figured the stress from the past few months had caught up to me, no biggie.  The ER nurse was worried I had H1N1 because of my cough, so they made me wear a face mask while I waited in the lobby.  Eventually I was brought to an exam room and my blood was drawn.  Around midnight the doctor came in and told me I had leukemia.  My white blood cell count (complete blood count or CBC), which is a measurement of the number of white blood cells in a microliter (less than a droplet) of blood, was around 100,000.  Normal is around 7,000.  In addition, almost 100% of the cells visible when observed under a microscope were cancerous and non-functional.  The ER doctor said my blood was so full of cancerous cells that it was becoming thick.  We talked for a little more before I was transferred up to the oncology ward of the hospital to begin my stay.

As soon as I left the emergency department I began meeting my endless stream of doctors.  The hospital is part of the University of MN Medical School, so each certified doctor was followed by their entourage of students.  This is how a typical visit would go during my entire stay:  I would be lying in bed, there'd be a knock at the door, and I would tell them to come in.  There would be an attending physician who was the boss.  S/he had been practicing for years and would make the final call when determining my care.  Next in line were the fellows:  practicing doctors who were nearing the end of their training in whatever specialty they had picked and had about the same knowledge of the attending.  Then came the residents:  doctors still in their "field training".  Next was interns:  med students just out of school.  Finally were the med students themselves, who were still in school.  Sometimes there would only be one or two doctors, sometimes there were eight.  Typically only the fellows and attending doctors would be the ones who would talk to me, the rest were there to observe.  Once they had finished they'd file out and I could hear the lower students asking questions to the attending and fellows about my case.  Not only did I have a large number of doctors, but they would rotate every couple weeks.  My care was still coordinated by a single doctor my case had been assigned to, but who came into the room to discuss treatment with me changed regularly.

Once I was admitted, the first thing they needed to do was figure out what kind of leukemia I had in order to know which chemotherapy drugs to treat it with.  The test for this is a bone marrow biopsy.  A core of bone about an inch long is removed from the hip and the resulting hole is aspirated to remove marrow that is then examined under a scope to determine the composition and morphology of the marrow cells.  Most results are returned within a day or two, I think mine took four.  It turns out that I have Acute Biphenotypic Leukemia (ABL or mixed-lineage leukemia), an extremely rare and aggressive form of the disease.  Instead of either AML or ALL I have both, so to speak.  The cancerous mutation occurred in a precursor cell to both the myeloid and leukocyte lineages (further towards the trunk of the tree).  My oncologist later checked the University of MN's records database and said there have been less than ten cases ever recorded at the U of M, which is one of the top cancer hospitals in the nation and the pioneer of bone marrow transplants.

One of the toughest parts of having a rare cancer like mine is that the doctors don't know how best to treat it.  If I had been diagnosed with AML or ALL there would be little question about the best course of action.  There have been hundreds of thousands of cases of AML/ALL to reference and they have found what works best.  With ABL there just simply isn't the information needed to form accurate and tested treatment plans.  My doctors contacted cancer centers around the nation in order to figure out what to do.

If you do a Google search of AML or ALL you get more information than you could imagine:  descriptions, pathology, statistics, treatments, etc.  If you Google ABL you get crap.  Most reputable cancer sites don't even mention it, and when I do find information for ABL the data is either biased heavily towards an older population, a small sample population, or extremely dated.

Even with the lack of an established treatment plan the doctors were able to develop a plan for chemotherapy and started it quickly.  Then my real problems began.

A Brief Overview

Leukemia is a cancer of the blood, affecting the production of healthy white blood cells.  Cancerous cells found in the bone marrow divide abnormally, producing huge numbers of immature immune cells.  These cells are produced in such high numbers that they crowd the marrow space, blocking the production of healthy immune cells and eventually spilling into the blood stream, traveling to other organs in the body and causing damage.

Think of it as a tree.  A single stem cell exists as the base of the trunk.  That cell dividing and differentiating is like traveling up the trunk and reaching the branches.  Here there can be thousands of cells, like the leaves, but each could have a different function.  Like a tree, these cells all grew up from the trunk and branched into different specialities.  Leukemia affects this tree by causing a single branch on it to grow uncontrollably, causing so much disproportion that the tree as a whole cannot survive.  Many different types of leukemia exist and are classified based on what cell types the cancer affect.  The four most common types are Lymphoblastic Leukemia and Myelogenous Leukemia, both of which can occur acutely or chronically.  These two titles refer to the specific cell lineage found to be cancerous (lymphoid or myeloid white blood cells).  In these forms, the cancer can be though of as occurring near the ends of the branch, that is, once the cell lines have become relatively differentiated.

Leukemia affects people of all ages, genders, and races.  Approximately 45,000 people will be diagnosed with leukemia in the United States in 2009.  It has a higher prevalence among the elderly (median age at diagnosis is 66), men (57%), and individuals of European descent (12.8 per 100,000).  Leukemia is the most common form of cancer in children (33% of total cancer diagnoses in children <14 years old).  The overall five year survival rate among the four major leukemias among all ages is 55%, but it should be noted that children have a significantly higher survival rate than the entire population.

Statistics taken from the Leukemia and Lymphoma Society.

A brief introduction

Welcome to and thank you for reading my blog.  My mother would say I have an amazing story to tell, and over the past six months it has become apparent how many people want to know my story.   Furthermore, these events have provided me with experiences unlike anything I could have imagined.  It is my hope that, through this journal, I will be able to present these experiences to those who seek it and offer my thoughts on what I have learned.

I welcome questions and comments, whether posted to this blog, on Facebook, or emailed.

Cheers -

Nic
nkempfert@gmail.com