Not a great week (updated!)

My goal in the hospital is to be the boring patient. Everything goes as it should, no complications, don't need anything from the nurses, and I get out as soon as possible. All of my hospitalizations up until this point have been like that. Now that changes.

I came into the hospital with the gall stone problem already, so we've been dealing with some elevated liver enzymes and the stent (tube) that was put into my common bile duct to hold it open (it was getting clogged with cancer cells. Happy thought indeed). So this tube is sitting in the bile duct, running between the liver and the entrance to the intestine. It's anchored into place but it can still move around. Guess what happened?


Yes, the stent moved, but only a little bit. This may mean that because cancer bad boys are dying the tube can slide around more, but what it really means is that it is now poking me and it hurts. That started a week ago and I had to get back on my pain medication pump because a tube poking into your liver from the inside does not feel good. Of course to find out that the stent had moved I had to get an x ray and an ultrasound. On the plus side, the GI (gastrointestinal) doctor who came to see me was very nice and pretty attractive.

Then on Tuesday I woke up running a pretty high fever. Suddenly a little before noon I developed a horrendous, sharp, stabbing pain in my upper chest and left shoulder. It hurt to inhale, it hurt to move around too much. The pain was unbearable, my left arm was a little numb and felt weak. I honestly thought I was going to die of a heart attack or a pulmonary embolism, I was extremely anxious and upset. They put me through a bunch of procedures to check for heart problems and clots - xray, EKG, spiral CT, ultrasound of my shoulder, blood tests. Thankfully all of the tests came back negative, and I eventually got my pain and anxiety mostly under control with my pain pump. I slept sleeping up because lying down was so uncomfortable. I ran fevers again the next day and still felt pretty crappy, tried to take a walk around the floor but only go one lap in because it hurt so much to breathe. Ate a little lunch (big news because the day before I only had some juice), got an echocardiogram (mostly normal but showed some fluid in the sac around my heart) and then FINALLY started feeling better. I was in less pain, was breathing a little more easily, felt like getting up and walking around a bit. I've felt better every day since, but this is the most scared I have ever been. I really thought I was going to die.

So what was this mysterious chest pain that wasn't a heart attack? Pericarditis, or fluid in the sac around the heart. It's apparently a pretty minor problem that they treat with NSAIDs to reduce inflammation, but you wouldn't know that from the evil resident who came to see me. There is a chain of command in the hospital. At the top of the pile is the attending physician, the "real" doctor who is responsible for seeing inpatients. This is a position that rotates among the doctors in each department (like cardiology, neurology, oncology) and changes usually every month or every couple of weeks. Because I've been in the hospital so long I've seen three different GI attendings and two different oncology attendings. Then you have the fellow, someone who is doing post-residency training to eventually become certified in a subspecialty (like cardiology, etc). Then you get the resident, the low man on the totem pole, fresh out of medical school. The resident doesn't actually know much about patient care but they usually have big egos and think they are geniuses. Residents rotate between different subspecialty departments over 3 years to help them pick out what they want to eventually get certified in. They are sent out to examine the patients and take a history of the problem, then report back to the attending and fellow. They all come around as a team later in the day to discuss your problem with you.

I got THE WORST resident EVER from cardiology. I got the feeling that this guy looked stuff up and then wanted to show off how smart he was by telling you exactly what he had learned, no matter how relevant it was. The first time I saw him I realized that he had a terrible bedside manner and worse personality. He said they were thinking pericarditis and had to tell me all the other possibilities and all of the possible long term effects.... yikes. I was rather upset after he left, it was just so much information and I had no idea which parts were relevant and which weren't. I felt much better later in the day when the whole team came by. The attending and fellow couldn't have been nicer and more reassuring - it really isn't a big deal, it clears up on it's own, no need to worry too much but we'll do some more testing to be sure. Fine. Then the next day the resident comes back to review the findings of a blood test they had ordered the day before to see if my heart muscle was involved in the pericarditis. Gordon had already told me that the enzyme they were looking at was barely elevated and he didn't know what that meant, so I had a little bit of information already. Knowing that the resident was an idiot, I decided that I wasn't going to be too concerned when he came in and told me that yes, it meant the heart muscle was involved and that I was at risk for future heart failure. I just discarded it entirely and decided to ask the attending and fellow about it later when they came around as a team.

When the attending and the fellow came in, they talked about the pericarditis again as not a big deal and didn't seem concerned about anything, so I said that the resident had told me that there was some involvement of the heart muscle and what does that mean? The attending and fellow flatly denied that there was any involvement of the heart muscle and said I shouldn't worry. End of story. I hope he got chewed out by them for making things up and thinking he's a genius. What a loser. Luckily he is the only person at the hospital I've encountered like that so far, but seriously! People like that should not go into medicine!! I think he has some kind of problem, like Asperberger's, maybe. Or at least a case of terminal stupidity.

Then to make matters worse, last night they put me under "droplet precautions." They are testing me for a bunch of viruses that may have caused the pericarditis (may also have been caused by one of my chemo drugs) and one of the viruses can be transmitted by coughing, sneezing, etc. Apparently it is now hospital policy that anyone suspected of having anything respiratory is now being put under these precautions, which are that anyone who enters the room has to put on a plastic gown, mask, and gloves, and I am not allowed to leave my room! Not at all, not to walk down the hall to the kitchen to get some water, not to get myself food, not for anything. I am literally a prisoner in my room. This is ridiculous, and everyone thinks it's ridiculous, but nevertheless, I still have to be put under these rules until the test comes back negative.... on Monday or Tuesday!!! Luckily I was able to get a pass out of the hospital today, I should get one tomorrow, but man, I have to get out of this place. I am going to go completely insane. Today is Day 35 and I am ready to bust out of that joint.

In summary, I am fine, the fluid around my heart will go away on it's own and is already much better than it was a few days ago. The weird part is that sometimes when I inhale I can feel the "rub", this weird vibration of the sac and water and heart moving against each other.

In other news, my hair started falling out. More on that some other time.

Food, glorious food

I've lots over 10 lbs in the past few weeks. It's a great diet: don't eat or be on a liquid diet for two weeks. You'll starve but the results are great!

When I first checked in to the hospital 26 days ago (yes, I'm counting) they wouldn't let me eat for 3 days because at the time we thought it was a gall bladder problem, and eating aggravated my pain. I was also getting lots of different tests that required me to not eat beforehand. In total it was more like 3.5 days and oh boy was I happy when they finally let me eat after that last test!

Then of course I was just on a liquid diet, but liquids are much better than nothing, right? Finally they moved me up to mushy foods - applesauce, mashed potatoes, and I decided ice cream could be included on the list because it melts, right? So it's still technically a liquid. Anyway, they finally put me on a full diet again, except of course for those pesky tests that require you to be NPO (= no food since the night before).

Then of course I started chemo, and all bets on food went out the window. Not only does chemo make you nauseous, but it changes your taste buds so that everything tastes different and most things taste terrible or vaguely metallic. Even water tastes bad, which is ridiculous of course because water doesn't have any flavor, but I can assure you, it tastes really bad after chemo.

The best thing about being in the hospital getting chemo is that you can eat whatever you want and you are actually encouraged to eat as many high calorie foods as possible. That means LOTS of ice cream! It's so funny because at some point I (an all girls) learn that you're supposed to minimize your calorie intake - don't drink juice because it's empty calories, only have ice cream once in a while (unless you are on vacation and then you can have it as often as you want, right Leesa?), eat lots of salads, etc. Well, when you're barely eating anything, people shove high calorie foods down your throat. The nutritionist keeps telling me to drink milkshakes (fine by me!), because water tastes so bad I drink a lot of juice, and I'm not allowed to have fresh fruits or veggies right now because I have almost no white blood cells (risk of infection from things that live in dirty soil that can carry bacteria). I'm stuck with milkshakes and ice cream and grilled cheese sandwiches. Tough life, right?

I have some foods that I always like to eat when I have chemo, usually my mom's homemade mac and cheese (awesomely cheesy), lasagna, and matzah ball soup (I'm Jewish, that's what we eat when we're sick). One chemo round I couldn't get enough tomato stuff - tomato soup, tomato sauce, lasagna, anything tomato-ey. This round I really haven't wanted any of those foods, except for matzah ball soup. I've been enjoying string cheese and grape juice. Kind of like wine and a good French cheese, right? Has living in France changed my chemo cravings?

I love being able to eat whatever I want without guilt for clogging my arteries and worrying how I'm going to work off the calories. I don't need to work off the calories! I'm still losing weight and they keep telling me to eat more. Keep supplying me with ice cream and I am happy to oblige. Really, if it weren't for the whole feeling sick thing, chemo would be awesome.

Insurance companies are douchebags

I am my insurance company's worst nightmare: someone who needs health care. Insurance companies make money by having a bunch of people pay an arm and a leg for health insurance and then staying healthy and never using their policy. That's how they make a profit and have enough left over to pay their CEOs over $100 million in bonuses every year.

I have what is called a "preexisting condition," or a health problem, and this makes me completely uninsurable. As long as I maintain constant health insurance without any breaks in coverage, insurance companies will always have to cover me and cannot claim "preexisting condition" even if I change from Blue Cross/Blue Shield to Aetna or United or whoever. The minute my coverage lapses, I am screwed and will never get health insurance again. The companies will be able to shrug their shoulders and say "sorry, preexisting condition, not our fault so we shouldn't have to pay for it."

My mom's insurance (BCBS) covered me up until my 25th birthday and then I switched to COBRA coverage. COBRA is for people who used to have health insurance but are now no longer insured; usually people who loose their jobs, but I know a lot of young adults who get COBRA when they are forced off their parents' policies. It allows you to keep the same policy you had but your employer pays less towards your coverage, so you end up paying a heck of a lot more than you were. Right now in order to keep me insured we are paying more for just me under COBRA coverage than for the other four members of my family. And COBRA is a pain in the butt - they send payment forms days before the payment is due, if you are late with payments they cancel your coverage, it feels like one gigantic trick to get you to become uninsured. It probably is. I would guess that most people who bankrupt themselves getting COBRA are people who need an insurance policy.

On Monday a woman from the business office came to my hospital room and said their information showed that my policy had lapsed. I assumed it was some weirdness with changing between being on my mom's policy and being on COBRA, and I assured her that I had paid for coverage and had the reciept. She said ok, no big deal, if it hadn't been fixed in a week she would come see me again.

Imagine my surprise when I told my mom about this incidient and she said "yes, I've taken care of it, don't worry about it." This set off alarm bells. Taken care of WHAT?

Apparently BCBS tried to claim that we had been late with September's payment and therefore my coverage was forfeit. They sent a little letter to the house saying I was uninsured and everything. I know that I paid that bill before the end of September and I remember having thought "I had better make sure I put this receipt in a safe place because you never know what these SOBs will pull." This was a couple of weeks before I was admitted to the hospital. I was so right. They gave us some BS about recieving the payment on October 8 when the receipt shows I paid on September 21 AND the bank statement showed that the check had been cashed on September 25. The situation has been taken care of, following what I can only imagine was a very scary phone call for the poor schmuck at the insurance company. My mom can be very, errrm, persuasive, especially when it comes to her kids. What a bunch of douchebags!

There is no doubt in my mind that they saw the huge influx of hospital bills for me, checked into my record, saw that my claims were not going in a good direction, and decided to try to get rid of me. Luckily we were prepared and knew what to do, but what about someone who may not have known that what BCBS is doing is wrong, or someone who had paid in cash and then lost the reciept? They would have been totally screwed, and not through any fault of their own, through the tricks of the insurance company! These insurance companies are a menace to society. If we do not pass health insurance reform this year I will be seriously disappointed and PISSED OFF. At the very, very least they have to get rid of this "preexisting condition" ridiculousness and stop insurance companies from dropping sick people.

I know my family would do everything they could to pay for my care - sell the house, get huge loans, take on second and third jobs. But it would never be enough. My medical bills are already way over $1 million for my lifetime and we're staring another $1 million in the face for a second transplant, medications, follow up visits, etc. No one should have to resort to such extremes simply to live. Health care is a right. Note that our founding fathers did not include "profit margin" or "bonuses" when they wrote the Declaration of Independence, but they did include the right to LIFE. Modern medicine is a miracle and everyone should be able to profit from it.

Apologies to anyone I may have offended with my use of coarse language, but sometimes the only true descriptions come from bad words.

Another kind of boring post

Today is officially my 21st day in the hospital and I probably have at least another 2 weeks to go. Bleurgh.

This is the problem with blood cancers: the chemo is supposed to kill your immune system. No immune system means you can't fight off any infection and you are susceptible to everything. So the doctors keep you in the hospital while the immune system is down to keep you from catching whatever crazy virus is running around the community. That translates to about a month in the hospital per chemo session. I already had two weeks in the hospital under my belt before I started chemo, and now I'm one more week down, meaning I have two to three weeks left in here.

Anyone else ready to scream yet?

I had five days of chemo last week, finished on Friday evening. Chemotherapy kills fast-dividing cells, specifically cancer cells, but along the way it also kills off the mucosal linings of your mouth and gut, hair, etc. Right now the chemo is going to work and killing my healthy bone marrow cells and hopefully all those rogue leukemia cells in my gut. Not sure if this round is going to make me bald or not, some chemotherapy drugs are more hair-toxic than others. I know that one drug I got will not make my hair fall out because my hair grew back the last time I had it (yeah, I've done some hard drugs in my day). We aren't sure about the second drug I got, so I will just be surprised in a few days as to what happens. Hair generally falls out Day 14-21 after chemo. If it doesn't fall out this time around, it will definitely come out eventually, it's just a matter of when I get which drug.

Another fun side effect is that everything tastes funny. Everything. Try finding something to eat when nothing appeals to you, and even if you do want to eat something it doesn't taste like it should. Popsicles are my secret weapon. Icy goodness is always refreshing no matter what it tastes like.

Right now I am in the middle of what we call the "nadir," when I literally have no white blood cell count. I'm not even kidding, the lab this morning said I had about 100 WBCs per mm3. A normal person should have 4-10 thousand WBCs per mm3. So imagine you, as a normal person, and how easily you get sick with a normal white count. Now imagine if you didn't have any immune system at all! That is why they keep me in the hospital during this time, and they will let me out again when my white count is on the upswing and I have enough WBCs to protect me from the common cold. The bone marrow is amazingly resilient and will grow back after all the crazy chemo. I just have to be patient and wait for it to get moving and hope I have a boring couple of weeks without any infections.

Sorry for the two boring posts in a row. It's weird blogging for a group of people who are new to how the chemo works. My friends and family who have already been through Rounds 1 and 2 with me know how the chemo cycle works, that it's a short burst of chemo and then a whole lot of waiting around for things to happen, but of course most of you I'm sure have no experience with treatment for AML. The advantage is that I get short little bursts of chemotherapy with generally a pretty immediate response.

OK, ground work is laid, now we all know something about treatment for AML (acute myeloid leukemia - there are several different types of leukemia and no, I do not have "childhood leukemia," that is a different type). More interesting posts coming up, promise!

The Cast of Characters

Since medical personnel will be a large part of my blogging experience, I thought I would give a brief introduction of the new cast of characters on my blog. Names have been changed or abbreviated.

Dr L - my transplant doctor in Michigan. Funny guy, good sense of humor, I feel very comfortable in his care, which is one of the reasons we decided to stay in Michigan for this go around

Dr A - my transplant doctor in Boston, did my first transplant. Very blunt and tells you exactly what he thinks, so I was very pleased when he was positive about my treatment options and didn't tell me to put my affairs in order (which he would have, if he thought that was the only viable option out there).

Dawn - the nurse practitioner who works with Dr L. She probably won't be part of the story until I get back in for transplant in a few months.

Penny - my primary nurse. She is hilarious, really gets what it's like to be locked up in here, and has lots of funny stories. For example, today she told me that one time some teenage guy who was stuck in the hospital called in an escort to visit him and told everyone it was his aunt! I'm not that desperate yet, but ask me again in a couple of weeks and I may resort to tricks to amuse myself.

Gabrielle - my other primary nurse, super sweet, and bought me maple sugar candy when she was in Canada today! (remember, Canada is about an hour from my house. not a big deal to go there. well, it wasn't before they started requiring passports, I think it's more annoying now.)

Gordon - the fellow who is in charge of me while I'm in the care of the hematology/oncology team (hem/onc). The chemo that I'm currently getting is being supervised by the hem/onc team, not the transplant team, which made things a bit more complicated because I'm being seen by the pediatric service (more on that another time) and the pediatric hem/onc residents aren't allowed to deal with patients over 24. I clock in at 25, just barely too old. So Gordon volunteered to be my "case manager" or something. Anyway, he's really nice, pretty cute, but very married. Oy.

Adam - the medical student who is in charge of me. Because of the "no resident" deal, Gordon is getting helped by a medical student. It gets weirder. A very dear friend came over a couple of days ago to help me put pictures and postcards up on my wall to brighten up the place a little, including a picture of us. Adam recognized her and said she had been in his precalc class. Yes, Adam apparently went to the same high school as me and graduated a year after I did. Weird, right? It gets weirder. According to my parents his family are also members at our synagogue, and I guess his dad had a transplant for lymphoma when he was much younger. He seems very nice, very concerned, and I think he has the makings of a good doctor. It's just a little weird that we have all of these connections.

There are many other nurses and doctors who are in and out of here who may end up in the entries as well, but these guys are the main ones.

Things here are okay. I am finishing the 5 day chemotherapy protocol today (because they had some problems in the pharmacy my first bag wasn't ready to go until 8:30 so I can't get the last one until 12:20 AM. Annoying). I have an excellent anti nausea drug called Anzamet so I am doing okay with nausea. Seriously guys, if you ever know someone else dealing with cancer, get them on Anzamet, it is a miracle drug. Other than feeling tired, I'm doing okay.

Some days you gotta dance

What changed? Nothing good.

That "stomach bug" I thought I had in my last post turned into massive, unbearable pain two weeks ago, causing me to call my doctor (transplant doctor, of course, because I don't actually have a primary care physician, oops). I ended up being admitted to the hospital with elevated liver enzymes and strong suspicion of gall stones. I wasn't allowed to eat for the next three and a half days because eating aggravated the problem. A couple of days later, sure enough, tests confirm gall stones, which had passed by that point. I had an endoscopic ultrasound (ie they stick a tube down my throat while I'm under sedation to get a picture of what's happening on the inside) to make sure things had cleared out, and at that time they took some tissue samples to see if GVHD was aggravating the problem.

The next day my world came crashing down around my ears... again. At the very end of the day the doctor came to give me devastating news. The tissue samples had revealed a hematologic malignancy in my gut - a blood cancer.

They weren't sure at that point if it was my old leukemia that had relapsed or a new cancer that had cropped up, the pathology lab hadn't finished their analysis. I found out last Tuesday that yes, I had relapsed, for the third time. Last week was a blur of tests and procedures - a PET CT, MRCP, bone marrow biopsy, lumbar puncture, and the placement of a stent in my bile duct to hold it open against the onslaught of rapidly growing cancer cells threatening to choke off the entrance to my intestines. The good news is that the leukemia is only in my gut; it is not in my bone marrow or my central nervous system. But how weird is that? I have leukemia in my gut, like on my pancreas and in my liver and stomach. WTF?!?

I started chemotherapy this afternoon. My mood has been pretty good today, I'm still in a lot of shock and denial, but I was not a happy camper yesterday. I was out of the hospital on a day pass and I spent part of the evening packing for my upcoming month in the hospital, just like I did five years ago when I was first diagnosed. I sat down on the floor of my bedroom and cried, just like I did five years ago, but I was not crying because of the unknowns and the newness of the diagnosis, as I did back then. I cried because I thought I wasn't going to have to do this again and I can't believe that I have to go through this again. I really thought that this time I was really safe, that I wasn't going to relapse again. I thought I was actually able to move on with my life, I was planning for the future, I was finally enrolled in classes to start moving towards the goal of medical school. Cancer has already screwed up my life enough, and here it is, back for yet another round. Jerk.

And here I am, back in the hospital. Again.

I'll get chemo for the next four days (five, including today) and then be in the hospital for a month as my immune system and the leukemia cells are killed by the chemo, which will make me extremely susceptible to infections. Then my bone marrow will grow back and they'll let me out. We'll probably do a second cycle like this in a couple of weeks later, depending on how many cancer cells we killed this time around, and then after that I will be getting a second bone marrow transplant. That is unbelievable. We can get into why BMTs are so intense another time, but trust me, they are very difficult. They have already identified 10 possible matches for me from the national transplant database, which is an amazingly high number. So far I feel OK - I'm not puking yet, let's hope it stays that way.

This will end up being my longest hospital stay ever. I will probably be in here for 5 to 6 weeks total, counting the week I spent here with gall stones and the week I spent getting testing done. I've done three separate month-long stays before, but this is going to be ridiculous. I just hope I will be able to keep myself from going totally crazy in here. I'm already thinking up ways to keep myself occupied and entertained, and suggestions are certainly welcome.

I will probably continue to update this blog during treatment, which is kind of depressing. This blog that I started to chronicle my time in France will become a chronicle of my third journey with this terrible disease. Instead of chronicling my adventures in Europe I will be blogging about the four walls of a hospital room. If cancer bothers you, you don't have to read my blog, see ya later. I like to think that I find the humor in the situation and can spin a funny story out of what happens in the hospital, so I promise it won't be all doom and gloom. It won't be exclusively cancer though, I still have lots of things to say about my time in France and observations about French culture and maybe other random tidbits of life when I eventually get out of here. You, the reader, should feel free to ask me questions in the comment section and I will try to answer the questions as best as I can.

One type of question I will not answer is any question or comment about my chances of "making it." First of all, I don't know what the survival statistics are for relapse of AML after transplant because I made a point of telling my doctors that I don't want to know and I will not be researching it on the internet. I imagine they are pretty bad and I don't want to hear it, I think that would be psychologically devastating. Secondly, the only numbers that actually matter for any individual patient are 0 and 100. You either live or you don't. I am going to try my very hardest to make sure that I live.

Fuck you, cancer.

I don't know why I am still surprised by the fact that life can change completely in just an instant.