25 March 2011

wazh cycle

I hope I don’t jinx myself by saying so, but so far I seem to be having a good, uneventful cycle. Mind you, my use of the word “cycle” refers not to a monthly period, but instead to a treatment cycle. Mine is three weeks. Which means that from the day I get chemo, it is three weeks until I get chemo again.

The first week is like the Wash Cycle.

Imagine that you’re doing laundry. What happens in the wash cycle? You put the dirty clothes in the washing machine, add soap and bleach, fill the machine with water, and your clothes agitates for 10 minutes or so in soapy sudsy water.

I am that washing machine. Lucky me, I carry my dirty clothes with me wherever I go!

A typical wash cycle for me starts with a pre-wash the day before my chemo when I have to start taking meds. Wednesday actually starts wash day. I arrive at VCU Massey around 8:30am. They access my port and do a blood draw, then I go see my doctor. Since Massey is part of a teaching hospital, I usually see several doctors, nurses, nurse practitioners, and students. There we discuss any ongoing issues as well as anything new that might have come up. While this is going on, the lab is running my blood work and mixing my chemo drugs.

Once I’m cleared, I go back to the chemo room where they add the soap and bleach. They start me on IV fluids and more premeds. Now that I have a catheter, this is an interesting time for me because it seems like the fluid goes from one bag into my body and then immediately out to another bag! Click here for a great scene in the film “Catch-22” that illustrates what this feels like. After 30 or 40 minutes, they give me my actual chemo drug. This takes ten minutes, and then I am free to leave, usually stopping for a bite to eat on the way home.

It is important that my machine stay filled with water. Important because I need to make sure that my kidneys are functioning well and that I’m staying hydrated. I drink 2-3 quarts of fluid a day, usually Gatorade. Which means I’m peeing quite a bit. Lots of full bags of clear yellow pee! Yay!

And then I get to agitate. Except for me, it’s more like 10 days than 10 minutes. During the agitation is when I get all the side-effects. The first side effect is that I feel kinda icky. My face is flush and I experience hot flashes from the Dexamethazone, one of the meds I have to take for three days to stave off the nausea.

Side-effect number two is, coincidentally, that I can’t have a number two! The “GI issue” that hits me is overwhelming constipation. This is a side-effect of my chemo drug, but is made worse by all the other meds I have to take during this process. So I end up taking even more meds in an attempt to keep me number two-ing at least once a day.

On about the third day, the third side-effect hits me like a Mack truck: crippling fatigue. It isn’t just that I can sleep all day, it’s that I can’t not sleep all day. I go to bed at the regular time at night, but I don’t wake up until 10 or 11 in the morning. I eat breakfast, take my morning meds, and drink my first quart. Then I take a “nap” which feels more like falling into a coma than having a brief siesta. If my phone never rang, I could probably sleep all the way until dinner time. (Please don’t let that stop you from calling me - I have no problem falling back into my coma!) I may or may not wake up for lunch, but whenever I do wake up I drink another quart. And then when Jeff gets home I wake up again for dinner and - you guessed it - drink another quart. Then I doze on the couch until it’s time to go to bed, and the process starts all over again.

My days are like that until around day 7 or 8. Which explains why if I don’t write my blog update right away, it doesn’t get done until well after my chemo. Because it’s hard to write a blog when you’re unconscious!

The hope is that the doctors will find the proper combination of soap and bleach to remove enough of the stains from my soiled clothes to wear them out in public again without looking like a hobo!

I’ll hang in there as long as it takes!

Stay tuned next time for the Rinse Cycle!

09 March 2011

big girl pantz

Sometimes in life, the anxiety you feel about an unpleasant event is worse than the unpleasantness of the event itself.

This past weekend, I was forced to face some fears that had been causing me loads of unhealthy anxiety. And now that I’ve faced them, I realize that it really wasn’t so bad. If it happens again, I can put on my big girl pants and deal with it like a grown up instead of a crying 2-year old.

Last week can be described as simply awful. I had caught Jeff’s cold so I was stuffy and coughing, not to mention running a fever. And since it was in the first week after my chemo, my counts were low so I had no way of fighting off any infection. As if that wasn’t enough, I was peeing lots and lots of blood (or so it seemed). For three nights in a row, I was calling the after-hours emergency number to speak with the doctor on-call to see if I needed to head to the hospital. I didn’t, but after making that call, I was having trouble sleeping.

This all came to a head on Friday. I had labwork done which confirmed that I was neutropenic and I was still running a fever. And there was clearly something wrong with my catheter because the bag was empty and I was peeing around the tubing. Not good. It wasn’t just annoying - it HURT!

I was terrified of going to the hospital. I had heard so many scary stories of people getting some horrific infection after a stay in the hospital - most notably MRSA and Staph. I was also afraid that my catheter had gone horribly awry and I still was not over the pain memory of when they put it in, I did not want anyone touching it. Lastly, I was afraid of being on IV antibiotics. I am allergic to a slew of oral antibiotics and the idea of finding out I’m allergic to a new one fills me with trepidation. Anaphylaxis is no fun!

My doctor arranged for me to be a direct admit which meant that I could go straight to a room instead of going through the emergency room and letting them admit me. Jeff brought me to the hospital and we went straight to the 8th floor. I was put in a private room with a big note on the door warning that anyone entering must wear a mask. Jeff stayed until the doctor came and asked all sorts of questions - he was impressed with my encyclopedic knowledge of my own medical history (I have MT Bee and MT Jeanne to thank for this - they have trained me well to ask questions and know everything about my care).

As for my catheter, he was pretty sure there was a blockage somewhere. I was also having spasms in my bladder and when that happened, it moved the catheter in such a way that it was allowing me to pee. This meant I would need a bigger one since you aren’t supposed to be able to pee around it. You can imagine how quickly the tears did a-flow when I heard that! BUT the doctor assured me that they would do everything possible to keep it from being painful. And they did! They used lidocaine gel to numb the area and also put some on the catheter as they inserted it. It didn’t hurt bad at all. And it worked properly, which helped the spasms and other pain in my bladder.

They gave me lots of meds that helped me sleep. The bed was pretty comfortable, and like I said I had a private room. This meant I could watch whatever I wanted on TV and there wasn’t anyone to keep me awake talking. The nurses and doctors were all very nice. I have found that in general, oncology professionals have some of the best bedside manner.  It might also help that I’m a good patient. I’m not always ringing for the nurse, and when I do it’s for a good reason.

They told me I would probably be in the hospital for a few days. They were running blood cultures and they wouldn’t let me go home until they had the results. It usually takes 72 hours. So I settled in for a “spa weekend”, complete with ongoing leg massage. The nurses and doctors thought it was weird that I liked the leg squeezers (they keep you from getting blood clots since you are in bed 99% of the time) since most people can’t stand them. I enjoy the squeezing, and the hum of the air pump helped to lull me to sleep.

Another fear I faced that I hadn’t foreseen was that I would have to have a daily shot in my belly. This too was to prevent clotting. I have for most of my life been deathly afraid of injections. It isn’t the needles themselves that I’m afraid of, it’s just that it freaked me out to have any fluid injected or removed from my body. But when I was rediagnosed, I made a decision to deal with this without whining and since then injections and blood draws haven’t bothered me one little bit. Still, a shot in the belly is a bit icky sounding, but it really wasn’t too bad.  

I also got a few injections of Neupogen to help boost my counts. The count they most worry about is called the ANC - Absolute Neutrophil Count. Neutrophils are the new cells made by bone marrow that become stem cells, and thus become white or red blood cells (or whatever other kind of cell you need at the time). As healthy cells go through their life-cycles and die off, they are replaced by neutrophils becoming that type of cell. When your ANC is low, it means you won’t have enough cells to replace the dying off ones and you will be more susceptible to infection. A normal ANC is above 2000. When I was admitted into the hospital, mine was 800. (It’s notable that during my last course of chemo at Dana-Farber, my ANC typically dropped to 100 or 200 at it’s lowest, so 800 didn’t sound so low to me.) By Sunday, my ANC was up to 8300!  Partly because of the Neupogen, partly because I bounce back good.

At 6 am Monday morning, Dr B woke me up to tell me that I would be able to go home that day. All my blood cultures came back negative. My counts were back up. My catheter was working fine (there was still blood in my urine, but this could be because my bout with radiation in 2008 has left me with a very delicate bladder that is easily irritated). My spasms were being kept under control with Gabapentin.  And I had completed several courses of antibiotics.  

And boy, was I ever ready to go home! I missed Jeff! He came to see me every day, but it isn’t the same as being home with him :)

Since I’ve been home, I have been sleeping alot. The number one side effect of Alimta is crippling fatigue and I am definitely feeling it. I try to be awake in the evenings when Jeff is home from work, but during the day I’m asleep more than I’m not.

But I’m eating good and staying hydrated. My catheter isn’t bothering me too much. And other than tired, I’m feeling good.

OH - and my hair is growing back!!!!! I even woke up with bed-head this morning!!!!!! :)

Thanks for all your calls and well-wishes! Call me whenever, I don’t mind being woken up.

Especially now that I'm wearing Big Girl Pants!

02 March 2011

reality tricklez

Disclaimer: this blog post contains a bagful of reality - proceed with caution

So it’s to be this again - ups, downs, ups, downs.

One week ago, I had my first treatment of the new regimen - Alimta. I was anxious to get started because I had been experiencing The Symptom. My initial diagnosis in 2008 led from a routine exam, no symptoms. My recurrence was discovered in 2010 during routine follow-up, no symptoms. But now in 2011, I had been having The Symptom: I was having trouble peeing.

I had always thought of myself as one of the great pee-ers. Chromosomally, no, I was never able to write my name in the snow. But I could rival a fire hose in PSI. Enter The Symptom. Suddenly, no matter how bad I had to pee, no matter how many cc’s of fluid were building up in my bladder, it would only come out in a trickle. Like a faucet you can’t quite turn off all the way. And only a little at a time. It started gradually, only happening if I didn’t drink enough that day. Then it got to be where I was having to go every X minutes - sometimes 10, sometimes 30, sometimes 60 - but with regularity, I was making the trip down the hallway with what I was sure would be a giant man-sized piss only to trickle a teaspoon. This was getting annoying.

My advanced degree in biology had led me to the following possible diagnosis:
The lymph nodes around my bladder that had been getting active were making it difficult for my bladder to expand or contract, thus making me feel urgency while not being able to really empty what was in there.

Dr B confirmed this as a possibility and prescribed some pills that made me pee the color of Cheetos, but had no real benefit otherwise.

In the midst of The Symptom, I was beginning my new treatment. When the appointment was made, it was to be a follow-up with only a possible infusion. But then the treatment was approved and the machine started turning. Coggy little me shows up when I’m told and lifts my sleeve when I’m told and sits where I’m told and “yes, go ahead, poison me, I welcome your torture” as I’m told.

I didn’t know what to expect, but based on my past chemo experiences, I made sure to bring enough activities with me to keep me occupied for at least 3-5 hours. They accessed my port at 9:55. There was a little wait while they ran my blood work, then I got brought into the infusion room for some pre-meds and fluids. And then the chemo. Which took - get this - a whole TEN MINUTES!!! TEN!!! 1-2-3-4-5-6-7-8-9-10!!!!!!!!!!!!!! I thought surely they must be kidding, but no! By 11:30, they had sent me on my way. From 10 hours to 10 minutes. Not complaining!

Now I had simply to wait and see what new side effects I would experience. What were the possibilities? Crippling fatigue! Nausea! GI issues!

GI issues.

When the GI issues kicked in, I become despondent. Defeated. Without going into detail, let’s just say that I have spent more than a day being as uncomfortable as I can imagine a person being without having a bleeding festering wound in their gut and a rusty spike through their abdomen. I spent much of my time crying and/or whining, which is so much fun for The Tall Man to have to deal with. I took a few hot baths and became very friendly with my hot-sock. But between the meds I have to take and the general intestinal issues I have dealt with ever since radiation over two years ago, I was feeling as if my midsection was filled with ever-expanding cement.

And on top of that, The Symptom was there. The peeing wasn’t getting any better. Sometimes it was much worse. There was the one night that I had to RUN to pee every 10 minutes for three hours or so (tho just a teaspoon at a time). And then, there was the night I didn’t sleep because during a moment of dozing I had a dream of peeing in a hot-tub and for the rest of the night I was afraid that if I fell asleep I would pee in the bed. And wouldn’t that be lovely.

In addition to all this bio-evacuation, Jeff was battling a sinus infection and I was doing what I could to make sure that my little head cold didn’t blow up into that 100.5° temperature that equals a trip to the emergency room. So let’s just say our weekend was not exactly fun.

The GI issues were beginning to ease up, but The Symptom was still there, bothering me. I felt jealous of anyone that could pee with ferocity, which in the limited scope of my Virginia social life amounted to The Tall Man or the anonymous woman in the next stall of the public restroom.

By Monday, I had pretty much had enough. I called my doctor and explained - it isn’t that it hurts, it’s that I can’t pee right. She had me come in right away for..... (wait for it)..... a Foley Catheter. Which I learned was a darn good thing because while they were inserting it, they discovered that I had an obstruction. What kind of obstruction? We aren’t sure. Could it be the growth between my cervix and bladder was pressing on my urethra? Perhaps. Could it be a chunk of the afore-mentioned ever-expanding concrete? Probably not. The point is not the nature of the obstruction, but that the obstruction exists. And now, through the magic of the rubber hose, I am able to pee again, in a manner of speaking.

For now, this means that I'm using a whole lot less Charmin and the 2000 Flushes gets really blue in between my uses. And it means that if I want to drive across country from Texas to Cape Canaveral to stalk my astronaut boyfriend and his slut new girlfriend, I'm all set. But it also means that I've reached a level of medical involvement that I hoped I never would.

With a Canary Letter on my chest.