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.