Sunday, December 27, 2009

Things have been going well since I've been home, just that I've been really, really tired. It's a lot different living in a small hospital room than it is living in a house. Instead of walking five steps to the bathroom, I have to walk down the hall. There are stairs to walk up and down a few times a day, there's a lot of back and forth between different rooms in the house, basically just a lot more opportunities to move around, and I find myself very tired out by it all. But I feel more energetic today, so hopefully I'll feel a little better every day.

I'm still not totally bald, and now I'm irritated. My eyebrows and eyelashes are falling out, and the eyelashes are a huge pain to loose because you need them to keep dust and crap out of your eyes and to soak up the eye gunkies that you get at night. Now when I wake up in the morning I have to peel my eyes open with my fingers because the gunkies just stay there and glue my eyes shut. That's fun. And at the same time I still have patches of hair around my face so my head is really ugly. How unfair is that?!?!

Wednesday, December 23, 2009

There's no place like home

I'm sitting in my kitchen, on my laptop, watching a marathon of America's Next Top Model on Bravo. Yesssssss.

I set a new personal best for discharge after transplant. Last time I got out Day +17 after transplant, and this time it's Day +14. Unfortunately I didn't get the all-time record for the hospital, which is Day +8, but that is insanely early. I'm happy with Day 14.

Of course I have to give a big thanks to my donor, the mystery man of 27 who was nice enough to give me some of his bone marrow. His cells started growing really quickly and I have rock star blood counts.

But a lot of credit goes to me, too. I kept eating the whole time, and eating well, I ate the calories and protein the nutritionist wanted me to eat. I was careful about infection precautions and didn't get sick. I did proper mouth care, I pushed myself to start taking pills again and get off the IV medication, which might have been the hardest, because I have gobs and gobs of pills to take and it's a big production to get them all down, I got out of my room and walked around the floor every day, even when I felt really crappy. And of course a lot of credit goes to my wonderful friends and family (including you guys!) who supported me during the worst part.

The mouth and throat sores are much better, but now the problem is that my taste buds have mostly fallen off so nothing tastes right. A lot of things don't have any flavor at all - super weird! You stick food in your mouth and you expect it to taste like something, but no, it feels like my tongue is coated in plastic and I'm chewing packaging noodles or something equally tasteless. Tomato sauce has been the best thing, fruit juice is okay, but otherwise I'm really at a loss for what to eat until my taste buds grow back. Last time I had trouble with things tasting funny too, but I don't remember it being this bad.

OK, back to shallow TV and brainstorming food ideas.

Tuesday, December 22, 2009

Still on track...

... to be discharged tomorrow. Fingers crossed! I would set a new personal best record of getting discharged on Day +14. Last time I got out on Day +17.

Monday, December 21, 2009

My counts continue to be really impressive and we're all a little surprised and pleased:

WBC: 12.5 (lower than before but still a little above normal)
ANC: 9.6
HGB: 10.2
HCT: 29.4
PLT: 137 (this is awesome, a lot of people have a hard time getting a good platelet count after transplant)

Mouth and throat sores are continuing to clear up and we're switching my medications from IV to pills. I think I only have one more to switch over tomorrow. We stopped the continuous pain medication and started some pills for that, so that's good news.

They are thinking about discharging me on Wednesday provided everything goes well!

Saturday, December 19, 2009

Aaaaand I'm back

First, thanks for checking in on me and all the encouraging messages. They give me a little boost when I'm feeling crappy.

Boy what a difference Day +10 makes! Counts:

WBC: 7
ANC: 2.5
HGB: 10.4
PLT: 51

What have I been up to? Sleeping and having very miserable mouth and throat sores. The sores make it hard to eat, drink, and even speak so the best thing to do is to just sleep through it. Luckily I have this super comfy armchair recliner in my room that is perfect for napping. I must make my parents get one like it at home. I did tell myself that I wasn't going to sleep in armchairs this transplant, that I would make an effort to get in bed when I was tired, but this armchair is fabulous and I don't like hanging out in bed all day, I think it's better to get up and save the bed for night time. Good news is that I've been able to keep eating. I'm not eating much, mostly these milkshakes that my mom adds protein powder to. No, I am not trying to pursue my dream of being a professional weightlifter, the nutritionist has been driving home how important protein is during transplant and recommended it. I think my brother was pretty impressed.

Right now I'm still in the hospital because of the mouth sores. I'm still having a lot of pain so I'm hooked up to a pain medication pump, and because I was having so much trouble swallowing all of my meds were switched over to IV form rather than pills. I have to be off the pump and on the pills before I can go home. Probably a few more days still.

Yesterday the rest of my hair started falling out. Hair falls out 2-3 weeks after chemo usully, so this is right on time. I've been wearing my hair up in a ponytail to cover up how thin it is but this actually got really gross when the hair started falling out because all the dead hairs stayed in in the ponytail part and made a huge gross knotty nest of dead hair. It was really gross. So I had my mom bring some scissors in and I just cut off the bulk of my hair in one big chunk, then my mom helped trim up the rest so that it's as short and close to my head as we could get. Now I really look like a cancer patient. And I thought that there were no more surprises for me in being bald, but there was one left! I have a new mole freckle thing on my head and I don't like it! It is going to totally ruin the bald look. I'm going to have to look into bleaching creams or removal or something.

Tuesday, December 15, 2009

Day +6

After having a bunch of energy over the past couple of days, I crashed today and spent a good chunk of the day sleeping. I remember that during my last transplant Day 6-Day 10 were the toughest days. That's because this is when the white count is the lowest. Today was the first day that I had absolutely 0 neutrophils, or the white blood cells that are the first line of defense against infections. I'm anticipating that the next couple of days are going to be kind of rough, so if I don't post, it's probably because I'm tired and don't have the energy. The best way to get through this time is to sleep through it. Once my donor cells engraft in a few days and I produce some white blood cells I'll start feeling better and start thinking about getting out of here...

WBC: 1
ANC: 0
Hgb: 10.8
Hct: 29%

Monday, December 14, 2009

Day +5

Good news: it was another boring day. Except for when an IV pump started beeping at 6 AM and the nurse didn't seem to know how to make it stop, so it kept going off intermittently until 7 AM and I lost an hour of sleep this morning. That wasn't cool. You know, you're in the hospital because you're sick and need to rest, but they make it impossible! First they come in to take vital signs (blood pressure and temperature) at 1 AM and 5 AM. At some point between 5 and 7 AM they do a blood draw (luckily for me they've been doing it with the 5 AM vital signs, so that's one less disturbance). Then the IV pumps are constantly beeping because a bag is empty or there is air in the line or something stupid like that. Sometimes the nurses have to come in to give you oral or IV medication and wake you up either accidentally or purposefully. And of course because you get pumped full of fluid all day and night, you wake up a zillion times to pee. And they wonder why everyone here is sick!


WBC: 0.9 (again, not a real increase)
ANC: 0.1
HGB: 11.3 (also not a real increase because it can depend on how much fluid is in your system)
HCT: 32.9%
PLT: 65 (got a nice bump from my transfusion yesterday)

Sunday, December 13, 2009

Day +4

Today was entirely uninteresting, except for the fact that I got a platelet transfusion. This is a good thing. My goal is to be a very boring patient until I go home. Boring means no fevers, infections, other injuries, other medical problems. We just want things to go nice and smoothly. I still have mouth sores and they are getting worse, but I still have my PCA, and I can push the button as often as I want. Not a huge deal. Eating is going OK. My mom is making me these high calorie, high protein milk shakes that I usually eat kind of half frozen. I'm really enjoying them because they are cold and quite soothing for my mouth and throat. And you guys know I'm happy as long as there is ice cream involved :)


WBC: 0.8 (no idea why this went up. They will probably still go down close to 0 before rebounding)
HGB: 10.9 (you can see I got a nice bump out of the transfusion yesterday)
HCT: 31%
PLT: 17 (you can see why I got a transfusion)

I'm still not totally bald. Hair usually starts falling out 2-3 weeks after chemo, so in about a week the few remaining strands of hair will start going. Well, that's an exaggeration, I have enough hair to cover my head if I put it up in a pony tail, but it is extremely thin. Now how is this for irony: at the same time, my eyebrows are still growing. Not just growing, but sprouting! I have never seen eyebrows grow this fast in my life. I was "blessed" with pretty hairy eyebrows and I've been plucking them for about ten years. On a normal day there are always a few stray hairs to take out, and if I go a few days without doing a little grooming of course they start growing back into their thick, hairy glory. I've been through the chemo bald routine before, and usually my eyebrows don't completely fall out, they just get thin and I don't have to pluck them because the hair stops growing. It's actually nice to keep some of the eyebrow because you still look relatively normal and avoid the real cancer look - you know, bald face and surprised eyes without eyelashes. Well, that didn't happen after my chemo in October. The majority of the hair on my head fell out, but I still have to spend about 20 minutes every day plucking the little eyebrow buggers that seem to come out of nowhere! How is that even possible? Do I have some kind of pharmacological haven in my eyebrows where chemo doesn't penetrate? Sure, it's nice to still have eyebrows, but seriously! What kind of cruel joke is this that I'm mostly bald but I still need to pluck my eyebrows? As if I really have the time or energy to deal with this right now!

Saturday, December 12, 2009

Day +3

No fevers today, which is good news. I am finally getting mouth sores, which are exactly what they sound like (can also be in the throat) and are caused by the chemo. Mouth sores don't go away until the new immune system starts growing, because you need the white blood cells to heal, and they can make eating and swallowing pretty painful and difficult. So, I am now on a patient controlled pain pump, or a PCA, and I have a little button I can push to get some great pain meds and feel all better.


WBC: 0.6
HGB: 8 (had a blood transfusion today)
HCT: 22.9%
PLT: 32 (will probably have a platelet transfusion tomorrow)

The Amish are gone! I was so disappointed when I left my room for my daily walk and they were no longer there. How am I supposed to occupy myself if I can't spy on the Amish anymore?!

Friday, December 11, 2009

Day +2

I still have very low counts and now I'm starting to run fevers. A fever is the body's normal reaction to having no immune system; basically it does whatever it can to keep you from getting sick, like running fevers to cook out any bugs that might (or rather, will) get inside and infect you. When you start running fevers they test for any infections and immediately start antibiotics and antifungals just in case you have caught something and need help getting rid of it. They rarely do find any specific infection, but when there is no immune system, it is much better to be safe and throw broad spectrum treatments at the mystery fever than to just wait around to see if there is actually something there.


WBC: 0.6 (this is not an actual increase, probably due to normal variation in the blood sample)
HCT: 26.3%
PLT: 43

There is an Amish family getting treated here. Actually there are apparently two families (according to one nurse who tells me things) but the other family is finishing treatment at the outpatient clinic. I am fascinated by this on so many levels. First of all, just the fact that they are Amish is very interesting. It's a way of life that is completely, radically different from what the vast majority of people in Western, developed nations lead. Imagine cooking without a food processor? Or farming without tractors? Or how dark the house must be in the winter when the sun goes down at 5 PM and you can only use candles for light?

Then of course there is the fact that these poor families have been thrown into a situation where they have to take part in a way of life that is so different from what they are used to. I had to look up what Amish regulations are on the use of modern medical care, and apparently it differs from community to community. I think it's wonderful that these families have chosen to seek modern medicine for their children, but it must be traumatizing on so many levels. First of all, the shock and trauma that comes from having a child with cancer, and secondly going into this world that is completely different from yours. Wow.

When I walk by the room the lights are off and the television is not on (although I heard that the other Amish boy getting treated here was really amazed by the television and turned it on as soon as he was in his room. Kudos to his parents for letting him watch TV!). Interestingly, they are in a double room, and I really couldn't figure out why until today. I mean, you'd think that in the case of an Amish family they would really try to give them a private room because of the cultural problems that might arise from sharing with another family. I think though that I found out why they are in this room. It's a very large room and there are windows all along one entire wall, so there is a lot of light in the room. Of course in the winter that doesn't mean a whole lot after 5 PM but I wonder if they requested a room with good lighting?

During my last transplant I read Plain Truth by Jodi Picoult, which is about an incident in an Amish community, so it's kind of funny that during my second transplant I'm actually with the Amish.

At least I have something to interest myself with while I'm stuck in here, right?

Thursday, December 10, 2009

Day +1

The transplant went off smoothly yesterday and now I'm just doing a bunch of waiting.

Thank you all so much for your kind wishes, it meant a lot to me, even if I have been remiss about posting. No news meant I was a little tired.

People often describe bone marrow transplants as being anti-climactic because it's a pretty simple procedure. You get hooked up to a bag of orangey-reddish fluid, it infuses into you over however much time (mine lasted less than a half an hour), and then the nurse unhooks you and that is that. No big surgery and recovery time, you don't get to go home, no fireworks go off. There is still a long road to recovery after a bone marrow transplant. The first step in that recovery is engraftment, when the new cells start growing in my bones. That will probably happen in a couple of weeks. Right now my white count is quite low and the exciting part is keeping infection free without an immune system.

White blood cells: 0.4 (normal is 4-10)
Hemoglobin: 9.4 (normal is 12-15)
Hematocrit: 27.5% (normal is 35-45%)
Platelets: 81 (normal is 150-500)

When my hemoglobin drops below 8 and my platelets below 15 they will give me blood and platelet transfusions. Folks, it is so important to donate blood products. My treatment would not be possible if there weren't wonderful people out there who donate blood and platelets (and I fully understand that many people cannot for various reasons and this is in no way meant to disparage them). My body is not producing red blood cells or platelets right now and without transfusions I would not be in a good place. Make an appointment to donate today!

In about 2-3 weeks when I have neutrophil counts above .5 for three consecutive days I can think about going home but my immune system will still be very weak for the first 100 days after transplant and I will have to follow a restricted diet - no raw fruits or veggies, no moldy cheeses, no raw or rare meat, etc.

But that is a long way away and for now I'm taking it one day at a time. Day +1 is so far so good.

Tuesday, December 8, 2009

Change in Plan

Transplant will be happening tomorrow, not today! Turns out the bag o' cells won't be arriving here until 10 PM tonight so we're just going to do the transplant tomorrow instead of today. Not a big deal at all.

I am feeling much better without the chemo. Still pretty tired, still napping during the day, but I'm eating more and not as nauseous and have a little more energy. I'll probably have a few more days like this where things are good while my white count is still normal, but once my white count bottoms out a few days from now I'll be feeling pretty crappy until my new cells start growing around Day 10-12 after transplant.

All the fun birthday plans have been put off until tomorrow and we spent the day decorating my room with balloons and streamers in preparation for tomorrow. Will try to post pictures if I find my camera.

Sunday, December 6, 2009

Thank goodness, today was my last day of chemo. Let's hope that tomorrow is a little better than today. I spent the whole day in bed, again. I keep having to remind myself that this is supposed to suck and I'm supposed to feel crappy and completely drained, and try to hope that the next day or next hour is better. Until it gets better, I think sleeping through the crappiness is a good technique.


WBC: 5
Hgb: 11
Hct: 32%
Plts: 155

Tomorrow (Monday) is a day off from all treatment and I'll be using it to plan my second second bithday party. Hopefully I will also feel well enough to write "joyeux noel" and my name inside the Christmas cards I bought to send to France. It would be nice if they arrived in France before the holiday.

Saturday, December 5, 2009

My concentration and memory are pretty close to zero these days, a lovely phenomenon known as "chemo brain." I barely had the patience to watch a half hour long episode of How I Met Your Mother last night and kept checking how much time I had left before it would be over. But I had a major victory today in that I have eaten a bunch of food - two bagels with peanut butter, three cups of cranberry juice, and this funky nutritional supplement mixed with Sprite. Major victory on the food front.

Other good news is that tomorrow (Sunday) is the last day of chemo! Yay! That should help me feel a little bit better. I'll probably still feel pretty crappy for the next couple of weeks until I engraft, but no chemo will definitely make each day a bit more bearable. Monday is a rest day and Tuesday is The Big Day.


WBC: 5.1
ANC: 5.0
Hgb: 11.1
Hct: 33.8%
PLT: 200

Okay, that's about all my brain can handle for now. Thanks again for all the support and good wishes.

Friday, December 4, 2009

Getting my butt kicked

This chemo regimen is getting to me. I'm sleeping most of the day and going through all kinds of different anti-nausea drugs. So far my puke count is at 0, and I hope it stays there. Eating is still happening, just not a lot of it.

One of the side effects of busulfan, one of the drugs I'm getting, is the possibility of seizures so they put these bumper pads all around my bed and I'm taking enough anti-epileptics that my dad, who is a neurologist, was surprised. Awesome.

I'm working on plans for my second second birthday party. I decided that I'm having a second second birthday instead of a third birthday because it sounds funnier and more appropriately represents what kind of birthday this is.

During my last transplant I was able to update my blog every day except one and I'll try to do the same this time around, but I'm telling you right now that I make no promises because I'm really getting my butt kicked. The most exciting part of perhaps daily updates will be my blood counts, which are the key to knowing if I've engrafted yet (egraftment, remember, is when my donor's cells start growing inside my bones). The numbers to pay attention to are the platelets (clot your blood), hemoglobin (carries oxygen around the body), hematocrit (percentage of blood that is red blood cells), white blood cells (immune system) and specifically a type of white blood cells called the neutrophil, which are like the first responders to infection.

My counts right now are normal:

WBC: 7.5
Absolute neutrophil count (ANC): 6.9
Hemoglobin: 10.8 (this is a little low but that's because I'm getting pumped full of fluids)
Hematocrit: 32.1%
Platelets: 209

The WBCSs and ANCs will get down to 0 or very close to it in a few days and then we'll be looking for the rebound. When my hemoglobin gets under 8 they will give me blood transfusions, and when my platelets are 15-10 they'll give me platelet transfusions.

And now I'm going to bed. Thanks for all of your support and good wishes, they really mean a lot to me.

Monday, November 30, 2009

Back to the Big House

Today I will be readmitted to the hospital for my bone marrow transplant. I will have five days of chemo and will have my actual transplant on December 8th. Here is a brief primer of what actually happens with a bone marrow transplant.

First step: identify a donor. Every cell in your body carries a protein marker called a human leukocyte antigen (HLA) that identifies it as being uniquely yours. It is important to match these proteins as closely as possible between the donor and recipient to avoid problems like graft versus host disease and rejection of the transplant. These proteins are determined genetically, so the logical and easiest place to find a donor is in the family. My brother and sister were tested the first time around, but of course they don't match me. They've never been of much use to me anyway. Only about a third of people needing transplants actually do find a match in the family, and the rest of us go to the national donor registry to see if someone there matches us.

Step One has been accomplished. A 27 year old male donor from America has been identified as a perfect match and has agreed to be my donor (I know I told some of you that he was 25, but I was given incorrect information). What are the chances that when we're allowed to meet we'll fall in love and get married? I should get some kind of benefit out of this!

Step Two: Recieve chemotherapy to kill off and kick out current bone marrow to make room for new bone marrow. I'll be getting two different chemotherapies, clofarabine and busulfan, Wednesday through Sunday. Monday will be a rest day. We have to get rid of my current bone marrow before I can get another one, and the chemo will kill off some of the remaining cancer cells. Even though I had a complete response to chemo, that doesn't mean all the cancer cells are gone. We know that some are still there, we just can't see them.

Step Three: recieve the actual transplant. December 8th is the big day, Day 0 in transplant speak. The transplant itself is just a simple intravenous infusion, exactly like a blood transfusion. No surgery. I will start taking immunosuppressive medications to prevent graft versus host disease. Then the fun part starts.

First we have to wait for engraftment, which is when the new bone marrow starts growing and producing cells. The bone marrow cells will actually find their way into the bones on their own, but sometimes they don't. This is a critical step. Engraftment usually happens around Day 10-12. Once I have a high enough white blood cell count (produced by the new, engrafted marrow) they will discharge me from the hospital and I can go home. Last time I got out on Day 17.

While waiting for engraftment I won't have a functioning marrow, so I won't be producing any white blood cells (immune system cells), red blood cells (carry oxygen around your body), or platelets (clot the blood). I'll be getting transfusions of red blood cells and platelets but you can't get white blood cell transfusions (see above about HLA typing) so I will be at very high risk for infections and will have to be extremely careful. LOTS of Purell.

In fact, I will have to be extremely careful for a very long time after transplant because my new immune system will be like a little baby - very weak and not knowing what to do, and I will loose all of my immunizations. Any infection could kill me, so for the first 100 days after my transplant I will not have visitors and I will only leave the house to go to the doctor. After Day 100 I will have some visitors again and perhaps venture out a little bit more. I haven't really decided what to do after Day 100. Last time around my doctor had very restrictive rules and told me not to go out for a year after transplant, so I didn't. I hardly saw anyone outside of my immediate family and I only left the house to go to the hospital for an entire year. It sucked a lot, and once was enough. I don't want to do that again, but it's hard to know how to balance the whole not wanting to get sick and die thing with the not wanting to die of boredom thing. To be determined. I'll also have to follow a low microbial diet (aka neutropenic diet) for the first 100 days - no restaurant food, no raw fruits or veggies, no raw or undercooked meat, no moldy cheeses, etc.

See why I spent so much time going out to public places and eating things this past month?

This is just a rough overview and I'll go into this in more depth later. For now I am going to enjoy my last few hours at home as a free woman and spend as little time thinking about the transplant as possible.

Wednesday, November 25, 2009

I am thankful for...

... my couette, aka my duvet. It is fluffy and warm and I love it.

... ice cream!

... The Confessions of Georgia Nicolson series of books by Louise Rennison. Like Bridget Jones but with teenagers instead of 30-somethings. Absolutely hilarious. Not great literature but for those days (and I'm having a lot of them right now) where you just want something light and funny that you can pick up and put down easily.

... the wonderful doctors and nurses at my hospital who take excellent care of me, especially my doctor, Dr L. I saw him in clinic on Tuesday and not only was I yet again impressed by how intelligent he is and what a wonderful command of the literature he has, but also by how hard he is working for me. Late relapse after transplant is not very common (although as more people are surviving transplant they are finding that there are more and more late relapses) and then add to that the fact that the leukemia relapsed outside of my bone marrow in my digestive system, which is extremely, extremely rare. He is dealing with nearly unchartered territory and making up what to do as we go along, while always basing his recommendations in very sound science. As he said to me on Tuesday, I'm pretty much getting an individualized treatment. There isn't a lot of standard procedure to work with here because this kind of thing happens so rarely. I am so thankful that I have such a caring and competent physician who is willing to do absolutely everything he can to give me the best chance for a cure.

... My wonderful friends, who stick by me through thick and thin.

... My amazing family, who are stuck with me through thick and thin.

... being alive.

Happy Thanksgiving to everyone!

PS I made my students make little turkey hands and write "I am thankful for ..." the past two years. They were so adorable! A very successful activity. They had a little trouble with the hand tracing part because I demonstrated it on the chalkboard first for them, but I am left handed, so the right handed kiddies were always a little confused. Kids are so cute!

Monday, November 23, 2009

Things I've done since my last post

- Ate ice cream at Sanders! Sanders is a classic Detroit/Southeast Michigan ice cream parlor. They are famous for their AMAZING hot fudge and for inventing bumpy cake. Of course I was too busy scarfing down my absolutely enormous double sundae with milk chocolate hot fudge and bumpy cake ice cream to bother taking any pictures, but this gives a pretty good idea of the deliciousness that was consumed. They make the best hot fudge you will ever eat - super thick and rich, and kind of chocolatey-caramely in taste. Yum!

- Tried more cupcakes! Cupcakes were available in large and mini sizes, which I like because that means you can try a bunch of flavors without overstuffing yourself. My favorite was the chocolate petals flavor, a rich dark chocolate cupcake frosted with perfect buttercream (just sweet enough, not super sugary, good texture). This time I actually did take pictures of all the cupcakes we tried.

From top: pumpkin cupcake with cinnamon frosting, carrot cake with cream cheese frosting, chocolate petal with buttercream frosting, vanilla with coconut frosting

Close up of the chocolate petal and coconut. I'm a terrible photographer, but this one turned out okay.

Bumpy cake!

From top right: chocolate cupcake with peanut butter frosting, coconut, cookies and cream with oreo frosting, and candy apple or apple pie (something apple-y and seasonal)

- Attended a funeral. Ayanna was a beautiful, very well behaved, dancing, Disney loving two year old girl. For part of the time I was in the hospital Ayanna, her mother and I shared a room. Her mom and I hit it off and spent several nights staying up very late talking and joking and trying not to wake the baby. Ayanna passed away very suddenly a week ago. The funeral was on Friday.

- Heard some people talking after the funeral about what a bad idea health insurance reform is and how the Democrats want to turn America into a socialist country. Of course these nutcases didn't stop to think that a public insurance option might have really helped this little girl and her family out. Some people in rural Michigan are pretty nuts.

- Had my first cavity ever filled. I was kind of nervous. I just don't have room in my life to deal with extraneous health issues. Cancer, fine, I'm used to it, I deal with it somehow. Cavities freak me out a little bit. Happily everything went smoothly, I didn't feel anything, and it took 30 minutes including numbing time. Recovery time was basically zilch; I felt like I had a fat lip for a couple hours and then it was fine and I only have a little bit of soreness. I'm actually pretty amazed at how quick and painless it was.

- Was introduced to Firefly. I had never heard of it before, but supposedly it's a cult classic. It was fun, I liked it.

- Tried to not think about transplant as much as possible but that's hard to do that when they keep making me come in for appointments and cut down on the amount of time I can spend going to dirty public places and eating food. I will be there alllllllllll day tomorrow. Ugghhh.

Thursday, November 19, 2009

I did it, but I blew it

I'm sure most cancer patients do it, because I definitely do. We imagine situations where someone bothers us about our hair and how we would respond. I've never actually been in a situation where someone gave me a hard time about being bald, so none of these imaginary things to say have ever been necessary.

Today I was at the mall because I'm trying to visit every germy public place that I can before I have to go into seclusion for my transplant. One of the delightful parts of being at the mall is all of the little kiosks where people try to sell you whatever weird product they are pushing, usually some kind of perfume or lotion or nail thing. I don't like being harassed in the hallway of the mall. I'm usually in a hurry, and no, I don't want your silly nail strengthening product.

As usual, a salesgirl harassed me today. I tried to avoid her by peering intently into the Banana Republic window display as I rushed by, but no, her incessant calling of "Miss! Miss!" forced me to pay attention to her. I really hope she doesn't spray me with perfume before I can say no, I thought to myself. And then she asks a question:

"How long does it take you to straighten your hair?"

As I've said before, I'm not actually bald yet. I have very, very thin hair that I'm keeping in a ponytail, which mostly conceals bald spots and makes it look like I still have a mostly normal head of hair. My hair is pretty thick normally and I had chemotherapies that aren't too hair toxic, so the two combined mean that I have been able to pretend I still have hair, even though I don't really. But I'm the only one who knows that, and it's complicated to explain why I still have hair despite having had chemotherapy, or I did actually have chemotherapy despite the fact that I still have hair. It's confusing. And I know that eventually I will be completely bald and have no hair, so in my mind I basically don't have hair right now.

There are so many ways I could have responded, and I chose the most illogical one.

"I have cancer. I don't have hair." Then I walked away. I immediately felt bad.

There are so many ways I could have responded. A simple "not interested" or "no thanks." Or just walking away without saying anything. Or if I really wanted to bring cancer into the discussion, I could have said "I have cancer, I'll be bald in a couple of weeks." That is actually a true statement. But I chose to say that I have no hair currently, despite the fact that I do have hairs attached to my scalp on my head that everyone can see. She probably thinks that I was lying about having cancer just to get away from her. Awesome.

What really bothered me though, and what bothers me now, is that it really wasn't necessary. She was just trying to do her job, it isn't her fault that I have cancer or that I'm mostly bald and won't have to worry about straightening my hair for a very long time. She probably feels badly, and there was no reason to say something like that to her. I'm also irritated that I blew what is probably the only chance I'll get to say something like this to someone. It will always be a bad story about how I screwed up and was unnecessarily mean to some poor salesgirl.

Now I had to do something to make myself feel better, so I decided to get some Starbucks and grab a cupcake from a new cupcake stand in the mall. I had to do a taste test for Leesa, who is famous for her cupcakes! I highly recommend the seasonal Gingerbread Latte at Starbucks, and my cupcake was AMAZING. See how good it looks:

I chose the Samoa Cupcake, which is "Coconut graham cracker bottom below our coconut chocolate chip cake topped with our coconut graham cracker crumble then drizzled with caramel and our homemade ganache." This cupcake was fantastic! It was super moist, the chocolate chips were yummy and melty, the coconut was just sweet enough and not too sweet, it was just super delicious and huge. It's from a local, family run bakery and I highly recommend stopping by one of their stores if you are ever in the Southeast Michigan area. Note: their location information is not up to date, they have at least one other location, and I know because that's where I was today!

Sunday, November 15, 2009

An Evening Spent in French

Last night I was invited for crepes by one of the other girls in my French conversation group. She is French, and her two French friends were also there, so I spent the whole evening speaking French. I was ravie to have the opportunity to really speak in French again! It's been almost two months since I've spoken French for an extended period of time. I could tell that my French has suffered since I've been back in the US - my accent has gone downhill, I'm starting to forget words, I don't speak as quickly as I used to. Overall though I felt pretty good, I didn't have to search for words too often, I felt like I switched into French pretty easily, I wasn't constantly thinking about how to conjugate verbs and making nouns and adjectives agree. I know I made mistakes, but I haven't totally lost it yet.

Of course we had to talk about my impressions of France and their impressions of America! It was interesting to me to see a little bit of our culture through their eyes and how after being in America for a while they had changed their ideas about certain things. Some interesting discussions we had:

- they seem to think we have a lot more bugs in the US than in France and therefore we need mosquito screens more than they do. I disagree! If I left my window open at night during the summer in France my room would be full of bugs! I eventually learned to pull the curtains closed over the window opening so that the bugs were fooled, but I still spent a lot of hours killing things that got in my room.

- we talked a lot about how accueillant Americans are vs how cold the French can be. One girl said that she likes how Americans are so friendly and welcoming, but at the same time it makes her a little uncomfortable because it's not the type of behavior she's used to.

- they have all decided that the French are pretty ridiculous about always having to be made up and dressed to leave the house, no matter for what or at what time of day. They said that after being in the US and getting used to the idea they are OK with leaving the house less than completely perfectly dressed. One girl sent a set of velour loungewear to her sister in France. The sister had called her up and demanded what she was supposed to do with these things!

- how great it is that stores in America are open ALL THE TIME - Sundays, holidays, after 8 PM, you know, whenever stores in France are closed.

- they think that Americans take more advantage of their time off than the French. We don't take vacations, but we do try to take advantage of time spent not working, for example, going out with friends on weekends and weeknights, finding things to do, joining clubs, going bowling, etc. They think that the French take their vacations and free time for granted because they have so much of it. I don't know how much I agree with this one, but it's an interesting observation.

It was a great evening, and I hope that there are more to come!

Monday, November 9, 2009

Ice cream and France/America comparisons

A few weeks ago, while I was out on a day pass from the hospital, we stopped at a local ice cream place (which I just realized I can't link to if I want to maintain my thin veneer of anonymity). At this point I had been rapidly losing weight and had just been put back on a normal diet, so I decided to gorge myself on ice cream because I love it. It might be my favorite food, and if you look at Leesa's blogs, you'll see that I've eaten ice cream all over Europe, so I have a strong base for comparison of flavor, texture, and of course the amount of ice cream they give you.

I ordered a medium cup, so two scoops of ice cream. Not anything excessive, right? Well, I had forgotten how big American serving sizes are! I was handed a massive mountain of creamy goodness. I don't think this size exists in Europe, unless you can find XXL ice cream sizes there somewhere. Not only was this thing enormous, it also cost a mere $3.50. Dollars! $3.50! A medium anywhere in Europe will set you back an average of 4 euros, or $6. Not to mention the fact that it will be much, much smaller, approximately what we would consider junior size. This ice cream was so big that I had trouble finishing it. I know people say the serving size difference between the US and France is part of why we are all so fat, but I have to say I don't really think it's a bad thing. We get so much more bang for our buck here! I would much rather eat an enormous thing of ice cream that I find well priced than a tiny little thing for a lousy 5 euros.

Of course I don't have pictures. I'll just have to go back and get another one to prove how different the ice cream sizes are. The ice cream was of course delicious, but I think should have been stored at a less cold temperature because it was very hard. You don't want to have to chip away at your ice cream for ten minutes until it melts to the desirable consistency.

Another comparison: ease of getting things done. A few days ago an alert popped up on our TV, something about the switch to digital and that we need to get some equipment from Comcast to preserve our service. I don't really know what the deal is because we have new digital capable TVs and I don't know what the problem is. Anyway, the boxes we have to hook up to the TV arrived today. My parents set them up after dinner tonight, and they kept griping about how annoying it was that the boxes wouldn't just start working on their own once they had been hooked up, that they would have to call Comcast to activate them.

I burst out laughing.

I couldn't help it! How easy is this! We get these boxes that we hook up ourselves, then call Comcast, they push a button, and the problem is solved! Can you imagine how it would work in France? First you would have to call France Telecom to get the boxes sent. Then you'd have to call the guys from Neuf or Orange to come to your house to hook them up, but it would take a month to schedule it. Then they would tell you that France Telecom had sent you the wrong boxes, so you'd have to start all over from square one. You'd finally get Neuf to come attach and activate the boxes, but then your cable, internet, and phone would stop working. You'd call Neuf again, you'd have the same problems scheduling them, and it would take another month to get them to come out a second time. They might finally fix it, but chances are you would have some other problem crop up that might finally be resolved six months after you called France Telecom for the stupid boxes in the first place!

I really laughed at my parents tonight. They have no idea!

Saturday, November 7, 2009

Skinny Jeans

As I said earlier, I lost quite a bit of weight back in the days when I wasn't allowed to/didn't want to eat. More than 10 lbs. I wasn't overweight before but you know, everyone has a little extra something they want to loose, right? I'm actually skinnier than I can ever remember being, and I am kind of delighted. Best diet ever!

Of course, the down side is that even though I'm out of the hospital, I'm not really going anywhere, so it's all a waste. I'm not showing it off to anyone. I'm shlubbing around my house in PJ bottoms all day. I'm mostly bald - errr, have very thin hair cleverly arranged in a ponytail to cover my scalp. I'm not really in the position to run around town all dressed up showing off how skinny I am. Even if I was, the only pair of jeans I have that fit me right now (that I bought at the end of my first year in France when I was almost as skinny as I am now, so they are a little big on me anyway) have a fly that won't stay up and has never stayed up. I have three no goes here - no real reason to leave the house, no hair, and the high probability of humiliation from being seen in public with an open fly.

What on earth is it with French jeans anyway? I have a few pairs of jeans that I bought from French clothing stores and NONE of the flies stays shut. One that stayed shut for a while, until that fly stopped working too. Isn't France supposed to be known for fashion? Why can't they make a decent pair of jeans? Anyone else have this problem?

See, even though I'm in America now, I can still blame France for all of my problems!

Just kidding. I know that the obvious solution to, well, two of my three problems, is to go out and buy a new pair of jeans, but it's considerably less funny to be rational than to just blame France.

Wednesday, November 4, 2009

Second Birthday

Not only was November 4th my first full day out of the hospital, but it was also the 4th anniversary of my first transplant, or my second birthday. I didn't actually tell anyone this, which is weird because I spoke to many friends today and yet I didn't say anything about it being my fourth second birthday to anyone, even though it was on my mind all day and is kind of a big deal. Maybe it was just too complicated to get into.

It was a day of very mixed emotions. On the most immediate level, sucks to be contemplating my second transplant on the anniversary of my first transplant. How many additional birthdays does one person need? I already have two, I really don't need or want a third. Instead of continuing to move on with my life and progress in all of my plans for the future, I'm back where I was four years ago, staring a major medical procedure in the face with my future on hold and uncertain.

On another level, it's a great day, because in the four years since my transplant I've done so well. I graduated from college and lived in France for two years. I lived in France for two years! I became pretty fluent in French, managed my way through French bureaucracy, traveled all over Europe, met amazing people, and generally had this wonderful experience teaching children how to speak a little bit of English. Even for someone who has been healthy every single day of their life that is pretty incredible, and I wouldn't trade that experience for anything. In fact I would almost certainly never have done the assistant program if I hadn't had a transplant. Going through the transplant and the year of isolation afterward made me want to do something more than just continue through to graduate school like a drone. It made me want to do something bigger, something insane like go live in a foreign country. Funny how life works out.

Even though my last transplant wasn't the ultimate fix, it still did a pretty good job for four years, and I have a lot to celebrate, regardless of what is to come.

Monday, November 2, 2009

Pediatric Hospital = Free Stuff! And some good news!

I got my first transplant four years ago in Boston (four years ago on Wednesday the 4th, actually. Happy 4th second birthday to me?). I lived in Boston with my mom for about four months, through the first 100 days after my transplant. The first 100 days is the most critical time, when your new immune system is the weakest and when you can get some pretty serious complications. Anyway, after 100 days when everything had gone smoothly we were given the OK to go back to Michigan. My doctor in Boston is BFF with the head of pediatric bone marrow transplant here, I think they went to medical school together, so he wanted me to be seen by him. I have been a pediatric bone marrow transplant patient ever since.

There were some immediate differences I noticed between adult and pediatric care. Peds doctors are much more concerned about thorough follow up care and quality of life issues. It makes sense; pediatric patients have their entire lives to live out, adult patients might be 50 years old when they go in for transplant and not have to worry about things like early menopause and how that affects their body. Almost as soon as I showed up in the pediatric clinic I was scheduled to for appointments with an eye doctor and a gynecologist, both of whom deal almost exclusively with transplant patients. I was also scheduled for a litany of tests - cardiac, pulmonary, I don't even remember what other tests. This was all done to make sure things were functioning well and to have a base line in case anything changed in the future. It kind of irritates me that these things aren't done for the adult population. More and more people are surviving cancer for longer periods of time and oncologists need to start thinking more about long term living issues, like if the lungs are working properly and how women younger than menopause age are managing being in menopause.

As an inpatient I notice the same difference. Physical therapy came up to see me one of my first days in here and gave me several different exersizes to keep me from sitting around like a lumpy potato during my hospital stay, and then came up to do a special work out with me once a week. Of course much of the difference I notice is just the fact that it is a children's hospital so they have an activity room with art projects, video games, pool, air hockey, a Wii, TVs, all kinds of toys for little kids. There's a lounge upstairs with similar stuff. Art and music therapists will come by if I want them to. I've had a few sessions with the art therapist where I made some embarassingly bad silk paintings that my mom can display proudly like the lopsided pinch pots I used to make in elementary school art class. There's a dog that comes around to visit every week, and even though I can't pet it because it's probably full of diseases, it's nice to have a puppy come in my room. Athletes from the university come by every Thursday to visit with the kids and give out autographed hats and t-shirts. I haven't had them come visit me (they always ask if you want to be visited) because I feel weird being so much older than them. It isn't as if it's always the football and basketball players either, it's usually the crew team or something random like that. Although I did think I saw the football coach up here last week....

Then there's the free stuff. You make out like a bandit in the kids hospital! Everyone likes sick children so there are all of these volunteer organizations that make things for the patients. Part of the difference between the two hospitals in this case might be geography rather than adults vs peds - I am in the Midwest, we're nice and we do crafty things that East Coasters don't do, like quilting. Yes, today I was given a quilt. I've also gotten a fleecy pillow, about 15 pillow cases, and a ton of stuff for Halloween. Best of all, they have a book cart. Unfortunately, the books are all for children or teenagers, but if I wanted I could get a free book twice a week. How cool is that?! One time some guys came by trying to give away toys and t-shirts. It's like a continuous stream of presents, and you know, it really does brighten your day to know that all of these nice people are trying to help you feel better.

Moral of the story: if you have to get admitted to the hospital, get admitted to a peds hospital. You'll be glad you did.

We had some GREAT news today! I had a PET/CT scan this morning to see if the chemotherapy did its job and killed some cancer cells. Result: Complete Response, which means they didn't find any disease! Good job chemotherapy!

The other excellent news is that they are planning on discharging me tomorrow, provided I don't start running a fever or speaking in tongues or something. Tomorrow will be Day 36. This is officially my longest hospital stay ever. I will be so glad to be out of here! Fingers crossed it goes off without a hitch.

Saturday, October 31, 2009

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.

Saturday, October 24, 2009

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.

Wednesday, October 21, 2009

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.

Monday, October 19, 2009

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!

Friday, October 16, 2009

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.

Saturday, October 10, 2009

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.

Saturday, October 3, 2009

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

Sunday, September 27, 2009

Yeah, I know, it's been a while

Not only have I been busy trying to catch up with reading and homeworks and whatever else, I have also been knocked out by some terrible stomach bug. Yuck. Of course the illness had to hit before my first biology exam on Wednesday and when I have a problem set due and a big lab write up.... My immune system is definitely not worth all the money I paid (and am still paying) for it. Can I get a refund?

Classes are... interesting. In biology at least we're learning stuff. Chemistry, on the other hand, is mind-numbingly boring because we're going over all of this super basic stuff that I still remember from high school extremely slowly. I think it's going to get more interesting once we get done with this chapter and move on.

I like chem lab, bio lab is a completely different story. My TA is not terribly intelligent. I mean, she must be because she's a grad student, so somehow she qualified to get into a grad program, but she makes lots of mistakes about the subject matter we're learning in class. I'm in the first-year biology class, learning the basics of bio that support the rest of the discipline! She should know this stuff! Or at least have reviewed it before recitation!

The kids in my classes are interesting. They apparently have problems reading the instructions for the labs, so a good portion of the class did the lab wrong this week. Most people are not interested in making friends, which is weird, and I feel like a freak for trying to make simple conversation. Honestly, when did talking to the other people in your class go out of style? I mean, there are a certain number of us in the room, we're there together a few times every week, can't we at least make polite conversation with each other?

And then there are the clothes. I haven't seen anyone in pajamas yet, but wow, it's weird to see how differently people dress in the States. Well, let's say "In Soleil's America," because I live in Michigan, and the Midwest has a certain reputation for being, well, not terribly fashionable. Of course there's the typical "camisole + tshirt" combination that doesn't exist at all in France. Layering is an art form among French women, but they don't do it the way we do it. Flip flops are huge here and non-existent in France. Big sweatshirts or t-shirts with the names of universities or your high school sports team or a professional sports team on them. I really don't get why the French don't wear big sweatshirts. They are comfortable and warm. SNEAKERS! Everyone wears sneakers, and again, I don't get why the French don't. When walking long distances I like my feet to be comfortable and not screaming in pain because my oh-so-stylish-very-expensive-boots are pinching my toes, or cursing as the heel of the boot gets caught yet again in between the cobblestones. Clearly Americans win the Smart Shoe contest, even if uncomfortable boots are extremely cute.

Then there's the "I just got out of x sports team practice and I couldn't be bothered to change my clothes but I did put on make up" look. I really don't get the jock-chic look. You know what I mean. The girls who come to class in gym shorts, t-shirts, hair in a ponytail with a cloth headband around the crown of their head, complete with perfectly applied mascara. There are a few possibilities here. One, they did just get out of gym class and stopped to put on mascara but not to shower or change their clothes. Two, they are going to gym class later and will have mascara running into their eyes once they start sweating. Or three, they dress like that because it's some sort of fashion statement. It's mostly the makeup that I object to, otherwise I have no problem with gym clothes in the classroom. Do you really need to wear full make up to go to soccer practice?

Not that I prefer French fashion, because frankly a lot of it is ridiculous and I saw plenty of fashion victims at the lycee where I lived. And I am certainly not at all fashionable. I can barely make myself presentable in the morning, let alone be in style. I just think the differences between the two countries are very interesting. Actually, the people here who dress the most like the French are the Muslim girls who cover their heads and dress modestly, which is funny when you think of the French attitude towards the foulard.

Saturday, September 19, 2009

Busy Busy Busy

Sorry for the lack of updates, I have been very busy this week! Mostly it's my own fault, I went to Boston last weekend to see some friends from college, didn't do any work, and had to scramble to get things done after I got back Monday evening.

Of course the other reason I've been so busy is my fault too... I'm terrible at math and it took me ages to figure out the chemistry problem set that was due on Thursday. I really try, but I'm just bad at math, my brain doesn't work that way, and I already know I got at least one question wrong on our quiz on Thursday. Scientific notation is my enemy. Of course the problem set had nothing to do with chemistry, it was all converting numbers. Ridic.

I'm trying to catch up on blogs from the past week and find time to write something more interesting here. I already know I have one coming about the way people dress in the US, it's a major culture shock!

Monday, September 14, 2009

This is NOT for grown ups

My classes are.... frustrating.

I had my first bio lecture on Wednesday. I looked around the room, saw that there were a good number of older-than-college-age people there and was glad to see that I wasn't even the oldest one there. There are tons of left-handed desks so I was happy about that too (yes, I am left handed, and yes, it is hard to use the righty desks).

Then the actual class started. We spent about half the class going over the syllabus, which I was annoyed about since we had already recieved it by email a couple days before, but you know, not a big deal. Then the professor asked for kids who were in their first semester out of high school to raise their hands. Only about 70% of the class did. The professor then asks the rest of us to bear with him for a few minutes. He changes the slide on the power point to one titled:

This is NOT High School

I almost got up and walked out of the room. Seriously?!?!?! Do the kids who just got out of high school even need to see this slide? He was just making the point that no one is checking up on them to make sure they go to class, do the readings, do the assignments, etc., but if they don't do them they will fail the class. Good grief.

Then we finally had five minutes where we actually discussed biology. The lecture on Friday wasn't much better, it was a simplified, glossed-over version of the reading. I have a feeling this is going to be a frustrating class.

The first chemistry lecture was similarly frustrating. Remember those old overhead projectors from elementary school? The teacher still writes on those while she's lecturing. I find that sort of endearing actually. BUT, we went over the difference between the English and Metric systems, which I can understand for maybe high school chemistry but all of us in the class have presumably already taken high school chemistry. And then we talked about the difference between a meter and a kilometer. And a centimeter and a meter. And a millimeter and a centimeter. And how to convert fahreinheit to celsius. And the abbreviations of common elements, like how oxygen is O and hydrogen is H.

OMG, shoot me. Or throw a brick at my head. Something to stop the inanity.

Maybe it will be better in a couple of weeks after we start getting into meaningful content? The frustrating part is that I have to keep going to classes to get homework assignments, and I'm too much of a goody-goody to just skip class. I might have to start a drinking game. Take a drink every time the chemistry prof has to review the abbreviation for carbon. Take a drink every time the bio prof has to remind us that we aren't in high school.

I hope the semester won't be as long as it seems like it will be right now.

Sunday, September 6, 2009

School starts this week. I bought my books, some notebooks, a planner. I haven't bought an agenda planner in a long time, despite the fact that they definitely help keep me on top of things. Note to self: buy agenda planners every year. Having an extra tool to help organize my life is a good thing.

I decided not to take a French class this semester. I checked out the class books when I was at the book store today and decided that the level of French in the class will not be high enough for me and therefore not worth my time. Aren't I a snob? Hopefully next semester they'll offer something better. Until then, it will be my French conversation group, France 2 news, the books I bought before I left, and CM2 and 6eme cahiers de vacances for me.

I'm not so thrilled about taking classes with 18 year olds. I'm signed up for bio and chem and their labs and I know they are going to be stuffed with kids fresh out of high school. Hopefully there will be some other non-traditional students like me who I can make friends with, and then we can roll our eyes at the kiddies together. Or maybe I'll meet some freshmen with hookups to all the cool frat parties and then I can do research on the spread of STDs in the college population.

One or the other ;)

Wednesday, September 2, 2009

The Deal for This Year

I'm sure you've all been waiting with bated breath to hear the latest in my quest to return to France. The verdict is that unfortunately this isn't my year to spend in France. I couldn't find a job that would keep me there, or to be more precise, a job I was willing to take that would keep me there (meaning not a bilingual secretary position or one that would have required a student visa and only in the Paris region).

BUT, that does not mean I am never coming back.

The plan for this year is to stay in the US, take some classes, work a little, and spend some quality time with the American health non-system. I'll be enrolling as a non-degree seeking graduate student and taking biology and chemistry and their labs, and hopefully a couple of other classes in history and anthropology if the professors ever get back to me about getting an override so that I can get in despite the fact that they are already full. Job wise, I may be working as an ESL tutor in the public schools here. We have a huge population of international students because many adults with families come from abroad to seek graduate degrees at the university and then their kids end up in the public school system and need to learn English. There's an orientation/information session next Tuesday so I'll know more about it then. It probably pays pretty badly, but I'm used to being paid badly to teach kids English. At least I know that the English classes will be a priority here!

I will also be getting some neat-o high tech treatments while I'm home to make "my" immune system start behaving itself. For the past couple of months I've been experiencing a flare-up what is called graft versus host disease, or GVHD. Because the immune system I have isn't a perfect genetic match for the rest of my cells, it can start thinking that my cells are invaders and attacking them, and that is called GVHD. I have very mild GVHD, basically mild skin tightening and darkening. I'm lucky that that's all I have, it can get worse, for example, joint tightening and lung problems. Unfortunately there are very few options for bringing GVHD under control. The number one option for many years was high doses of steroids (prednisone specifically). Been there, done that, it SUCKS and I refuse to do it again. Now a new kind of space age medical treatment called extracorporeal photopheresis, or ECP is quickly becoming front-line treatment because it doesn't have all of the terrible side effects of high dose steroids. You can read about what actually happens during ECP in the link above, the most simple explanation it's a blood treatment and takes about 4 hours. ECP not only stops the GVHD reaction, it prevents it from occurring again, and improves GVHD symptoms, joints loosen up and skin regains its normal color. The mechanism by which this happens is not fully understood so I'm part of a research study that is looking at how my white blood cells change during the course of treatment. I've gotten ECP treatment before both in the US and in France (which was a complete disaster, thank you bitch nurses) so this isn't anything new to me. The annoying part is that it takes up so much time, right now I'm getting two half-day sessions every two weeks, although that will probably switch to one session every week once classes start up.

Why is it necessary to do anything about this mild GVHD that only makes my skin funny colors? Because GVHD left to its own devices will slowly but surely progress into more serious forms that involve joints and other organs, and that would be very bad. By going through treatment I will prevent that by nipping GVHD in the bud now while it's still mild. I'm also still on immunosuppressants from my transplant almost four years ago, and hopefully once the ECP has controlled the GVHD and I'll be able to finally get off the immunosuppressants..... and then get off my other meds ....... and then get some vaccines...... and then .... I don't know what comes next. Anyway, best not to count my chickens before they've hatched.

So how exactly am I planning to return to France? I'm going to try to do an internship in Paris next summer, maybe combined with taking classes. That way I could spend many months in France since classes here will be over at the end of April, I could visit my students before school gets out, and I would have the entire summer to travel, I could even take a whole month at the beginning or end to travel. Leesa, are you listening??!!! I have some ideas for spending the next school year in France as well, but it's all theoretical, at this point my first goal is a summer stage and then on verra.

In the meantime I will be here, trying to have a social life but also trying not to let my roots grow too deep in the ground. More about that next time, because this post is already too long and if you stuck it out to the end, good for you.