Sunday, February 28, 2010
I've already complained about a lot of the side effects of steroids. When you're on high doses you feel totally charged with energy and have a ton of trouble sleeping. I didn't get a good night's sleep for about three weeks. That's over now. They also make you retain water and give you a puffy face, usually described as a moon face or chipmunk cheeks. I definitely don't have as much of a moon face as I did two and a half years ago after being on high dose steroids for months, but my cheeks are pretty chipmunk-y. They make you retain water. Lots of other things.
Then there are the emotional side effects. Steroids make you completely crazy. We've all heard of 'roid rage, but steroids can also give you tons of energy and make you really happy and energetic, and they can make you very sad and depressed. You have a ton of energy when you're on the steroids, and as you reduce your dose you get sad. 'Roid rage can pop up at any time.
The first couple of weeks on steroids I had a little bit of 'roid rage, and it wasn't helped by the fact that I wasn't eating. I was pretty crabby, but at least it wasn't as bad as the last time I was on steroids when I decided to attack my brother to get the remote control. Yes, I thought it was an excellent idea to enter into a contest of strength with my 6'3, 230 pound linebacker brother who can bench press five of me. I literally jumped on top of him and tried to rip the remote out of his hands. It didn't work. Luckily he just played a mean game of keep away and didn't attack me back because he could have done some damage. He's usually pretty nice to me.
Then the energy rush hit. When I am "high" from the steroids I have tons of energy, I am super chatty, I'm a little ridiculous, I say weird things in funny ways. There are some crazier parts of the energy rush too, like when I have long extended conversations in my head with random people, usually my doctor or nurse but sometimes political figures. I get fixated on things and go on long rants about whatever, usually something political but recently it's been about my stubborn old goat of a grandfather not getting his cataracts removed. Why??? Why won't he just get them taken out so that he can see better????? I'm actually pretty funny on steroids because I don't hold back and I come up with good lines. Wish I could harness that quality for use in my every day non-steroid life. I would be more popular and less awkward.
Then there's the sad and depressed part, which is the phase that I'm getting to now. Anything and everything can set off a crying jag. I engage in masochistic behaviors like reading old emails from my French ex, which is how I spent my Friday afternoon. Note to readers: this is never a good idea, and especially not when you're on steroids. I brood on things that aren't going right in my life, and unfortunately, there are a lot of those right now!
I'm in both the sad and energized phases right now, or rather switching back and forth between the two. Right now I feel pretty good, but Friday and Saturday weren't great. I don't expect the sad phase to last too long because I've had such a short course of steroids and I'm on a low dose now. At least I hope it doesn't, because it can be pretty miserable. At least this time around I'm aware of when the steroids are making me feel like a slimey slug and can do something about it. My tricks for feeling better when steroids are trying to drag me down:
- Watch a funny TV show or movie
- Read a funny book. Thank goodness for Georgia Nicholson and Paul West.
- Play awesome music that puts me in a good mood
- Avoid thinking about my life as much as possible
- Look at beautiful, soothing shades of turquoise on Everything Turquoise and House of Turquoise. Looking at these pictures makes me feel calm and serene, like I'm on an island paradise somewhere. Of course I would actually get incredibly bored on an island with nothing to do but go to the beach, but it's nice to pretend that I am the type of person who enjoys relaxing on the beach. Purple has been my favorite color my whole life but I find myself increasingly drawn to bright and light shades of blue because they are so calming.
- Keep my friends and family close to remind me that I am not, in fact, a worthless sack of maggoty potatoes. I'm very lucky to have a great group of people around me to support me and keep the potatoes away.
In other news, March 19 will be Day 100 and I will be out of jail!!! Can't wait to be able to see people and get out of the house for something more exciting than the doctor. I can't decide what I'm going to do first! There are just so many different things I'll be able to do again, finally!
Thursday, February 25, 2010
Note: Please reference How I Met Your Mother Season 5 Episode 14 to my inspiration for this piece (including the parts I lifted word for word) and the idea of A Perfect Week. Thanks to Monique for the idea.
Nantz: Hello, friends. Every sport has had an icon who transcends the game. Boxing had Ali, basketball had Jordan. But the sport of going to the hospital all the time has my next guest, the blogger known as Au Soleil Levant. Soleil, welcome to the show.
Me: Thanks Jim, thanks for having me.
Nantz: Soleil, the stats really speak for themselves here. Five and a half years, two continents, two states, four different hospitals, five separate month-long hospital stays, five week-long hospital stays, countless hours spent in clinic for routine checkups. It’s impressive. With all these accomplishments though, there’s one laurel that’s always eluded you. Which brings us to last week.
Me: I already had two appointments set up for the week. On Monday I saw the ophthalmologist who takes care of my transplant-related eye issues. It was a normal visit. He thought my eyes looked good.
Nantz: So Day One was pretty routine.
Me: Jim, there is nothing routine about the way I work it at the hospital.
Nantz: Respect. Tell us what happened later that day.
Me: Later that afternoon I got a call from the ECP clinic. I’d been on the waiting list for a couple of weeks and a spot had opened up. ECP is usually scheduled two days in a row every two weeks. They had an opening for Wednesday afternoon and Thursday morning, so I took them.
Nantz: Even though you already had a routine check up scheduled with your oncologist on Tuesday morning?
Me: Jim, ECP spots are at a premium. I took the Wednesday and Thursday slots.
Nantz: Now Day Two, Tuesday, was when things started to fall into place.
Me: Tuesday was a pretty epic day in and of itself. I showed up at clinic expecting a rather routine visit, but as you know Jim, I’d been having trouble with my platelets. My bone marrow is under a lot of stress and hasn’t been producing them. I’d been getting frequent platelet transfusions.
Nantz: And there are many possible reasons for this platelet problem. It’s enough to drive someone crazy.
Me: Yes Jim, yes it is. Anyway, of course my platelets were low and I had to get a transfusion, which means a lot of waiting. Waiting for a chair in infusion to open up, waiting for the platelets to come up from the blood bank, waiting for the premedication to take effect, waiting for it to finish, and then you have to wait around for a half an hour afterward to make sure you don’t have a reaction.
Nantz: But at least they have warm blankets and drinks and bagels.
Me: Yeah, those warm blankets are really awesome. But I can’t eat the bagels. Hate steroids.
Nantz: Word. But Tuesday was the day when you knew you were headed for something special.
Me: Yes it was, Jim. My doctor decided to schedule me to get my platelets checked again on Friday to see if I would need a transfusion. And that was when I knew. I knew I was headed for A Perfect Week. Five days, five hospital visits, five treatments.
Nantz: A remarkable accomplishment. And yet some might say it’s been a long time coming. It’s taken you over five and a half years to get to this point. Soleil, I do have to ask, did you use performance enhancing drugs to finally, finally, achieve this long awaited goal?
Me: Ummm…. I’m not sure “long awaited” is the way I would describe the cancer patient’s version of The Perfect Week. I think “dreaded” and “unlooked for” are more accurate terms. As far as performance enhancing drugs go, I think I have to say yes, because I wouldn’t have achieved this without the help of hard drugs like Clofarabine, Busulfan, Mylotarg, and of course the ‘roids. So sue me. Call me to testify before Congress. But I will swear to it that anyone who says they can accomplish The Perfect Week without performance enhancing drugs is a liar!
Nantz: I don’t think anyone would say that your performance has been anything less than honest and by the rules. I’m sorry I asked.
Me: No offense taken Jim. Sadly it’s a question that must be asked. No sport has escaped the stain of doping scandals, and I’m sorry to say that cancer patients have set the example with our excessive use of chemotherapy and steroids. Not that we wanted to, but you know, Barry Bonds had to get the idea somewhere.
Nantz: I have heard rumors that Barry Bonds was inspired to use steroids by seeing an emaciated, bald cancer patient become a fat slab of blubber through their use of steroids. Going back to your accomplishment though, which will never be tainted by allegations of illegal doping. Day Three did not go exactly as you had hoped.
Me: No it didn’t. I had to get another blood draw before ECP on Wednesday to make sure that my platelets were high enough for treatment.
Nantz: And of course they weren’t.
Me: Of course. So instead of ECP I had another platelet transfusion and was scheduled for yet another blood draw the next morning at freaking early o’clock, again to make sure my platelets were high enough for treatment.
Nantz: And they finally were.
Me: Yes, they finally were, so I had the ECP treatment and got ready to put my game face on for Day Five.
Nantz: Were you nervous going into Day Five? Did you think that you might break under the pressure? Did you worry that this prize might slip away from you in the last few minutes?
Me: Well, considering the fact that I live ten minutes from the hospital, barring a truly massive snowstorm, like 20 inches falling overnight, I knew I was safe.
Nantz: And did Day Five go as planned?
Me: Of course. I got some platelets. Had to go back again on Sunday for more, in fact, as I had done the week before.
Nantz: And how has the platelet situation been this week?
Me: Better than last week but still not resolved. I got transfused on Tuesday and I’m scheduled to go in on Friday with the possibility of going in on Sunday again.
Nantz: What on earth is wrong with your platelets?
Me: In general, my bone marrow is under a lot of stress. It’s been beat up pretty badly over the past few months and is probably screaming “Leave me the hell alone already! I wasn’t the organ with cancer cells in it! Why are you doing this to me?!?!”
Nantz: An understandable sentiment.
Me: I think we can all sympathize with my bone marrow. It could also be GVHD, it could be because of some of my medications, it could be a few other things. We’ll see what happens on Friday.
Nantz: Soleil, it’s been such a pleasure having you with us. Best of luck in avoiding another Perfect Week.
Me: Thanks Jim. If I do have another Perfect Week, I’ll be sure to let you know.
Thursday, February 18, 2010
Now I'm going for my own version of The Perfect Week: 5 days, 5 visits to the hospital, a treatment every day.
My week started on Monday with a routine visit to the opthamologist... well, the special transplant opthamologist. This is kind of a hold over from my first transplant because a form of GVHD is dry eyes, so I've been seeing this guy for a while, but I'm also supposed to have a visit with him around Day 100, so we kind of did a double duty normal check up/100 day check up. It was fine, he was happy with my eyes. Just a lot of waiting. That clinic is always super crowded.
Tuesday was my weekly doctor's visit. Again, normal, he's happy with how things are going, and it looks like my graft versus host disease is under control. We tapered the steroids. But I had to get a platelet transfusion because my platelets haven't recovered yet from the mylotarg treatment I had a few weeks ago. Mylotarg bottomed out all of my blood counts, and is the reason I had to take the neupogen and got the fever and had to go into the hospital. Tricky little bugger. But hopefully all of that means that it also got any left over leukemia cells too.
Wednesday I was scheduled to restart ECP. ECP, or extracorporeal photopheresis, is this very cool, very space age treatment for GVHD. Basically, they take out some of your blood, separate the white blood cells, give you the rest of it back, treat the white blood cells with a drug, and then give you the white blood cells back. This treatment somehow causes the body to recognize that GVHD is not a good thing and to shut the process down. I think it's amazingly cool and I feel really lucky to be going to a top-notch transplant hospital that uses ECP so extensively. I've had ECP before and I respond quickly to the treatment, so the hope is that this will stop any current GVHD and prevent further GVHD.
Well, even though I had a platelet transfusion on Tuesday, my platelets weren't high enough on Wednesday to get treated. So I got more platelets.
Thursday (you know, today) I went back for ECP (it's two treatments every other week). My platelets were OK so I could get the treatment. I love the nurses, they are so sweet and we have fun together. They have food, like bagels and popcorn and candies, and they have warm blankets too. There are few things better than a warm blanket!
Tomorrow I'm supposed to go back for another blood draw to see if I need a platelet transfusion. I'm pretty positive that I will, and then I will be the Superbowl of Cancer Outpatient Treatment!
Five days, five hospital visits, five treatments.... fingers crossed for tomorrow! Watch out Barney!
Sunday, February 14, 2010
Now my big job is blood glucose management and counting my carbs. Steroids, those wonderful little pills that have kept me from sleeping for the past three weeks, interfere with the way your body processes glucose. They bind to the insulin receptors on your cells so that insulin can't help the glucose enter the cell and be digested and turned into energy. My pancreas is producing insulin, I just can't use it properly. It's not good to have high blood sugars, for reasons I'm sure we've all heard, but it also makes you more susceptible to infection, and we know I definitely don't need that!!! We know that it was a big failure trying to manage my glucose with my diet, so I started the insulin.
Note: this is not meant to be an all-encompassing write up about how to manage diabetes, because I don't have that, or your blood sugars. This is just what I'm doing right now to make my life a little more livable. Right now we're trying to get to the point where my blood glucose is between 70 and 140 before meals. I can get to that level in the morning (when I've been fasting all night long) but I have yet to get to that point during the day.
There are two components to how I dose my insulin. First, is by testing my glucose, you know, pricking my finger with a little needle and having a machine read my blood. Based on that number I have to take a certain amount of insulin, for example, if my glucose is 215 I have to take three units of insulin.
The second component is taking insulin to cover the carbohydrates I eat during a meal. Because I have to take the insulin before the meal, this means I have to plan out everything I'm going to eat during the meal. Everything. To the point that I have to decide if I want 1/3 cup of rice or 2/3 so that I can adjust my insulin accordingly. With a measuring cup and everything! And then I can't have any more than what I've adjusted my insulin dose for. It's a totally different way to go about eating.
How does one count carbs? It's easy enough if you want to eat a piece of bread or a cup of yogurt. You look at the package, check the serving size, check the number of carbs per serving size, and calculate accordingly. For example, there are 16 g of carbs in a cup of the yogurt I like to eat. If I only want half a cup, it's only 8 g of carbs. I just have to be really careful about the serving size. For anything cooked, it's more complicated. Example: my mom made spinach lasagna this week. So we had to add up the carbs in all the ingredients - the noodles, the ricotta, the spinach, the parmesan, the mozzarella, the tomato sauce. This is where it gets complicated because you have to pay attention to serving size, carbs per serving size, and how much you put into whatever you cooked. There's A LOT of math involved, and I am terrible, terrible, really really wretched at math. Then you divide that by how many pieces there are to find out the number of carbs per serving, and then multiply that by how many pieces you think you're going to eat.
I do that before every meal: what will I eat, how much, how many carbs is it. For each 10 g of carbs I take an additional unit of insulin. I add that to the insulin I need based on my blood glucose, and that gives me the total amount of insulin I have to take before the meal. The annoying part is that even though I'm doing all of this and tring to be so careful, I still can't get my glucose under control!
The hardest part is snacking, because all of my snacks have to be under 15 g of carbs. Not that I'm a huge snacker, but it's kind of like The Passover Syndrome. I don't need to eat a bagel every day, but because it's Passover and I can't, I want to. I don't need to snack on fruit or cookies all the time, but because I can't, I want to! I would love to snack on celery or carrot sticks, but of course I can't right now because I'm still not allowed raw fruits or veggies. So my options are: 12 wheat thins, a cup of popcorn, five Hershey's kisses, a piece of string cheese, 2 Tbl of peanut butter. Or anything else I can find that's under 15 g. Actually, it should be closer to 10 g, since that's what I'm using as my insulin unit factor.
In summary, eating is better, but it's still kind of complicated. Hopefully not for too much longer. Going through all of this glucose-insulin nonsense has given me such a huge appreciation for what diabetics go through on a daily basis. I always knew it was a pain in the ass, and I've been told that after a while you get used to it and it becomes like second nature, but I can't imagine how hard it must be to do this every day of your life and deal with all of the other problems that come with diabetes. That takes real strength.
This post is dedicated to my wonderful friend Mary, who has not only put up with me for 20 years,but deals with everything life throws at her with grace and composure, and always has time to help her whiny, hyperglycemic friend. Thanks Mary!
Thursday, February 11, 2010
Naturally my fever stopped two hours after I was admitted and I haven't had one since. Figures! So I've just been hanging out here catching up with the wonderful nurses. Provided I don't run a fever in the next twelve hours they'll release me tomorrow. Short and sweet, that's how I like it.
I was really upset to be readmitted to the hospital, obviously. It felt like another step backward. But luckily it was short and I didn't have an infection and I can put it behind me. Actually, it was nice to be in a social environment again. I know all the nurses, they all wanted to say hi and see how I'm doing, some of my favorite staffers came by to see me. It's kind of like the old Cheers theme song "you wanna go where everybody knows your name." That's what the hospital is like for me. How sad is that!!! But I do think it was good for my spirit to be around people. Gave me a recharge for the next approximately 40 days before I can go out again.
It was also really helpful because I got to work intensively with the dietician on my eating issues. We changed my insulin schedule so that I adjust it based on my blood glucose and what I'm planning to eat, so that should help me manage my glucose levels better. She kept emphasizing that I can eat whatever I want as long as I'm counting the carbs and taking the correct dose of insulin. Pasta and ice cream all day long for me!!!
My mom pointed out to me yesterday that it's been about two months since I've been able to eat normally. First I was sick from chemo, then I had the mouth sores, then I couldn't taste anything, then I had the gut GVHD, and then I had this glucose problem. Two months without normal eating is actually a huge deal. I'm really glad that I'll be able to get back to some semblance of normal now.
Otherwise things are good. My mood is pretty good these days. I'm thinking about the future and coming up with some plans and listening to good music and figuring out ways to occupy my time. So things are good, and I hope that the next post will be from home.
Saturday, February 6, 2010
I decided to cave and go on insulin. I was so miserable not eating anything that I just had to suck it up and do the stupid insulin shots. Part of the reason I didn't want to do insulin is that in the past I've had to give myself shots at home of these drugs called Neupogen and Epogen, which are growth factors for that special type of white blood cell called the neutrophil and red blood cells respectively. You have to use a big honking needle for those things. Well, there are bigger needles, but those needles are pretty big, they hurt, and the injection itself stings. The insulin needle is this teeny tiny little baby thing that you can barely feel going in, so the injection itself is really not a big deal and I feel kind of silly for resisting and being miserable for a week longer than I needed to be. The improvement in my mood and outlook from being able to EAT again was immediate and I have been treating myself to some sweets - in moderation, of course. You can see my assortment of ice cream goodies - moose tracks and bumpy cake flavored ice cream with Sander's hot fudge. Is there anything better? My mood was also lifted by having a good visit with my doctor on Tuesday who thinks I'm doing "awesome."
Remember how I got the mylotarg last week? Mylotarg causes your blood counts to drop. I haven't been sharing my blood counts because they've been totally normal since my transplant, which is rare, most people have low counts for months after transplant. On Tuesday they were lower but still okay. Then I went in on Friday for a blood draw and my neutrophils, the first line defenders against infection, were 0, and my overall white count was 0.5. These are transplant-level numbers - very, very low and putting me at a huge risk for infection. So what did my doctor prescribe for me? Neupogen shots to raise my neutrophil count!!!!!
Here are the insulin and neupogen needles side by side. Notice the difference in the length and thickness of the needles:
Now I'm giving myself 2-5 injections a day total. Great.
I know this is just temporary, but I've been feeding myself that line for the past five and a half years now. Chemo is only temporary. Being bald is only temporary. Vomiting five times a day is only temporary. Feeling like crap is only temporary. Self-injections are only temporary. Being exhausted all the time is only temporary. Taking a gazillion medications a day is only temporary. Taking steroids is only temporary. 'Roid rage is only temporary. Feeling insane from steroids is only temporary. Not being able to sleep because of steroids is only temporary. Losing my hair from steroids is only temporary. Being fat from steroids is only temporary. Skin GVHD is only temporary. Putting on skin GVHD lotion twice a day is only temporary. Gut GVHD is only temporary. Drinking disgusting liquids for diagnostic tests is only temporary. Home infusions of magnesium are only temporary. Not being able to leave the house is only temporary. Not being able to see people is only temporary. Not being able to eat is only temporary. Being bored all the time is only temporary. Here's a question: When is it going to get BETTER?
Then a little bit of guilt kicks in. I know there are patients who are far sicker than I am, there was a huge earthquake in Haiti, so many people have lost their jobs and homes in the recession. My life could be worse. But really, how far can you get by telling yourself all the time "it could be worse." I want it to be good now! I am sick and tired of being sick. I've been dealing with this for YEARS people. It was easier the first couple of times around. I was younger and still very dependent on my parents, I had had fewer life experiences. This time around I've been very independent and living in a foreign country on my own terms for the past two years. If I wanted to go to Paris for the day or eat cake for dinner or blow my whole paycheck on clothes or go on a weekend getaway I could and no one could tell me no. Now my entire life is circumscribed by treatment and illness. I spend the majority of my day taking pills, giving myself injections, giving myself a 2 hour long infusion, checking myself for GVHD, putting on steroid creams to treat the GVHD, and worrying about my carb intake. Then of course there are all the days I spend at the hospital for appointments and tests. I haven't had a good night's sleep in about two weeks because of the steroids I'm on. Not as if I have anything important to spend time on or anything, but thinking about medical crap all day long is pretty low on my list of "ways I would choose to spend my time."
At least I have food, my drug of choice, to distract me. In fact, I might be ready for some ice cream now. Luckily my parents are full co-conspirators in my quest to eat whatever I want. I've lost 20 lbs since October and am still losing weight. Last night I got to eat all of the crispy skin from the roast chicken. Yum!
Here's another gratuitous ice cream shot to finish. Using a small tea cup is my effort at portion control so that I don't drive my glucose too high. See why ice cream is my favorite?
Monday, February 1, 2010
1) Make my tummy very unhappy by eating only protein and veggies, but keep my glucose lower
2) Drive my glucose through the roof by eating a very small amount of carbs (like two pieces of whole grain, low carb bread) throughout the day
It's not a secret that I like food - who doesn't, right? And don't I deserve to be able to eat whatever the hell I want when I'm going through all the rest of this crap? It's the only vice left open to me since drinking and men aren't really happening right now. Why, steroids, why do you mess with my glucose processing?! *shakes fist at the evil lord of steroids* From the minute I get up until the minute I go to bed I'm consumed with trying to figure out what I can eat, when I can eat it, how many carbs are in it, will that fill me up, will it upset my stomach, how much more weight have I lost etc etc etc.... It's very frustrating. I think that for simple self preservation I'm going to have to allow the docs to put me on insulin tomorrow because I am going insane. So I just need a break from thinking and talking about food all the time. When I can eat again we can discuss more of my favorite things to eat.
In other health news, I had an infusion of a drug called mylotarg on Friday. Mylotarg is a very targeted type of therapy that we're using to "mop up" the cancer cells that didn't get killed by the heavy duty chemo I had before my transplant. Chemotherapy doesn't always kill every little cancer cell, which is why cancer can come back, hence my need for more treatments. It was fine. I was a little extra tired this weekend but that was all.
I saw two very cute movies this week. The first one was My Life in Ruins starring Nia Vardalos. Remember her from My Big Fat Greek Wedding? She looked amazing in this film, btw. She's a tour guide in Greece but actually wants to be a big classics professor at a university. The movie is about the crazy time she has with this one particular tour group who chase help her find her inner spirit (they use some Greek word that I forgot). Anyone who has traveled will find a lot to laugh at because we've all seen these types and know how easily things can go wrong when you travel. There's some romance too, of course, but that takes a backseat to the story of this group of people who were randomly thrown together. I enjoyed this one a lot. It's just a fun movie.
On Friday I saw All About Steve, and honestly I didn't think I was going to like it at all from the previews I had seen on TV, but it was actually a really nice movie. Sandra Bullock does a great job playing Mary, a super smart but socially inept crossword puzzle creator who ends up chasing a blind date across the country because she thinks he's her soul mate. This is not a typical romantic comedy, however, because there isn't a romance. The message of the movie is about fitting in vs being yourself, "normality," and finding people who allow you to be your crazy self. Mary is a really great character and Sandra Bullock is of course wonderful. I definitely recommend this one. It's unfortunate that they didn't market it correctly.