25 April 2011

zpin cycle

How much of our laundry have we done so far? We’ve gone through the Wash Cycle, where we got loaded up with chemo and spent about 10 days agitating and sleeping. We’ve been in the Rinse Cycle, where the side effects of the drugs begin to drain out, but we also need to add the “softener” of medicine to control the pain and anxiety.

A Balanced Spinny
And now, here we are, finally in the Spin Cycle. During the Spin Cycle, the washtub rotates and the centrifugal force pushes all the water out of the clothes. Sometimes, the heavier clothes bunches up all on one side of the tub and you get a THUMP THUMP THUMP noise because the tub is spinning out of balance. Sometimes, when the spinning is over the clothes still feels wet as if it wasn’t quite spun enough.

Simply stated, the Spin Cycle can be unpredictable. Nine times out of ten it works exactly as expected, but that tenth time, it can throw you for a loop.

And that is what my Spin Cycle is like. UNPREDICTABLE!

It seems like it should go the same each time. The chemo drugs are pretty much out of my system. I’m fairly over the side effects, although I am still dealing with a fair amount of fatigue. My body is gearing up for the next round of chemo.

But then there are times that things go wonky. Constipation might come back with a vengeance. Pain may decide to settle in and keep me awake at night. I may be left with an overwhelming feeling of ennui. I might not be so hungry. And the addition of the catheter makes the wonky times all that much more....wonky.

And just as likely, I might feel great! I might have terrific energy. I might be able to do some light exercise. I might be eating three full meals each day, and cooking them to boot. And who knows? My catheter might be cooperative and feeling fine as well!

It simply depends - am I spinning in balance or out of balance?

07 April 2011

we interrup thiz current line of blog poztz for a chemo-day update

As I explained a few blog posts ago, if I don’t write a blog before the side-effect of sleeping around 20 hours a day kicks in, I won’t be able to do it for about another week. So even though I promised the next one would be the Spin Cycle, I’m cutting in line with an out-of-sequence update.

Yesterday, I had a day at Massey. And when I say “a day”, I’m talking a FULL day.

My appointment was at 8:45. but I had to arrive early enough to have my port accessed and blood work done.




The plan was this:

* Wake up by 5:15 to bring Jeff to work so I can have the car.
* Back home by 6:15 to go back to sleep for a bit.
* Wake up at 7:30.
* Jump in the shower.
* Have a bite to eat and take my Dex at 8:00.
* Be dressed and out the door by 8:10 to arrive by 8:25.


This is what really happened:

* Woke up at 5:15 and brought Jeff to work.
* Stopped for gas on the way home (gas light was on) and per his instructions, put in just $5 of gas.
* Realized as I was leaving the gas station that with gas prices what they are, $5 is not even 2 gallons, will need to stop again.
* Went back to bed with alarm set for 7:30.
* Woke up at 6:55 needing to use bathroom - updated alarm to 7:40.
* Checked clock at 7:25, decided that I would get up early if I checked the clock again before alarm went off.
* Checked clock at 7:55 and realized that alarm did NOT go off.
* Choked down dry toast to take my Dex.
* Jumped in the shower and tried to quickly wash.
* Got dressed and rushed to gather all my things I needed to bring with me.
* Left the house at 8:40.
* Got to the car and remembered that I needed more gas and that there are no gas stations between my house and the highway.
* Found a gas station a little past the highway on-ramp, was done pumping at 8:55.
* Called clinic and explained that I was running late.
* At the point on the highway where I was supposed to veer left to I-95, ran into a MAJOR traffic jam so took a quick exit to avoid.
* Took the long way and got kinda lost.
* Arrived in the clinic to have my port accessed at 9:45 - only one hour late.

This set the tone for the day.

I knew I was seeing my doctor, having my catheter changed, getting chemo. What I didn’t know was that this would take over five hours. Three hours of that was catheter related.

My doctor came to see me relatively quickly, and was very helpful and encouraging. She made my day by saying that I would have a CT-scan in two to three weeks to see how things are progressing. I have SO been waiting for this! And the other good part is that the scan will push back my next chemo by a week, which will mean that my schedule will cooperate with my cousin’s wedding in June without me having to ask for a postponement! Yay!!

She agreed with me that my catheter pains (burning, irritation, general ickiness and hurting) could be caused by two things: 1.) when they changed it in the hospital, they went from a size 16 (like a medium) to a size 18 (like a large) because I was peeing around my cath, but the peeing was likely caused by a blockage and not the cath being too small; 2.) I may be getting irritation from the latex even though I’m not technically allergic to latex. She took my suggestions and decided to change to a non-latex size 16.

In my head, this would only take 30 to 60 minutes. In reality, it was more like three hours. Because of the obstruction in my Urethra Franklin (such a good response, I had to reuse that one), I requested that they use Lidocaine Gel to lessen the pain when they inserted the new catheter. But the clinic is an outpatient center, and not technically a hospital so they don’t have Lidocaine Gel just hanging around. They also didn’t have a non-latex catheter on hand. My nurse spent so much time running around getting supplies and collecting apparatus that I had time to take a few refreshing naps.

She finally had everything and we were good to go. First, she removed the Statlocks (adhesive clips that keep the catheter in place on my leg). I had these on (one on each leg) for about a month and because each time I shower they unglue a little bit, the clips were mostly peeled off and there was residue that needed to be cleaned off with oily adhesive remover. This didn’t take too long and I’m glad she did it even though I was willing to get the supplies and do it myself at home.

The next part was to remove the current catheter. I was thinking this would be relatively easy, just deflating the reservoir that keeps it seated in my bladder and then gently pulling it out. In reality, this hurt like we were pulling part of me out by the roots. I was in tears and no matter how much time went by, the pain didn’t seem to dissipate any. It was awful! And then, of course, this made me nervous about having something else shoved up in there.

But the Lidocaine helped and my nurse helped me relax, so having the new cath put in was actually not too bad. The painful part was having the reservoir inflated because that added pressure to my bladder. It’s weird because this cath is clear so I can see what’s going on in there - which will be helpful if I encounter another blockage, but is almost on the verge of TMI. But I was peeing good and things seemed to be working fine, and I was now ready to go for chemo.

Chemo took less than an hour, and I was able to leave the clinic by 4:00. I had a few stops to make on the way home and then I could take some pain killers, enjoy my Wendy’s double stack (no cheese, plain, ketchup and mayonnaise only), and spend the rest of the evening on my couch. Jeff got a ride home so once I walked in the door I was free to just crash out.

I have to interject here - I need to give a GIANT SHOUT OUT to my big sister Julie. Some people say she spoils me with my regular care packages full of wrapped presents for me to open on the bad days. But she doesn’t just give me kitschy things, not just fun things, she also gives me useful things. And the MOST useful thing she’s given me thus far is an inflatable swim ring to sit on while I’m in the car. I have no idea how I would have been able to drive without that silly baby swim ring to sit on! THANK YOU JULIE!!!

And do you know what? By 8:00, my catheter wasn’t bothering me any longer, and I could already tell that this one will be more comfortable. SUCH a relief!

Now I am ready to sleep sleep sleep my days away. Next time, I promise to finish the saga of the washing machine with the all-too exciting Spin Cycle!

Until then, thanks for reading and supporting! Much love!!!

05 April 2011

rinze cycle

Before going ahead with the topic for this post, I need to revisit something I missed in the wazh cycle.

We’ve all had it happen - we do a load of white t-shirts, underwear and socks, but when we take it out of the washer, we find the dreaded red sock and now all the white laundry is pink. This is like me during my wash cycle. It is during this period that I am most susceptible to foreign germs and other nasties. My blood counts drop drastically in the first seven days of my cycle, so it is important for me to be aware of this and to do what I can to stay away from any possible infectors.

I did jinx myself last time after all, so at this time I’m not going to make any blanket statements about how things are going. But in general...

The Rinse Cycle.

Here I am again, the cheerful little washing machine. And now that we’ve gone through the wash cycle and gotten all soapy and agitated, it’s time for a rinse. And what happens in the rinse cycle? The soapy bleachy water drains from the washtub and new clean water fills it back up. And then there is more agitation while the clothes gets rinsed. Also, if liquid softener is being used, this is the time to add it.

How does this relate to the second week of my cycle?

First, the side effects that are caused by my chemo start to lessen, as if the effects of the chemicals are being drained from my body. This is not necessarily because the drugs are leaving me, but they are affecting me a little less. I’m not sleeping quite so much, and I can back off the laxatives because my body is more happy having a Numero Dos.

During this time, it is helpful for me to fill up with healthy food and lots of water. While I’m sleeping so much during the wash cycle, I’m not eating as much. But as I sleep less, I become more active, and I’m more hungry. It’s important that I eat lots of good protein and not fill up on starches and breads. My favorites are edamame (soybeans) and meats of all sorts. Jeff and I enjoy Steak Fridays, and we eat hard boiled eggs and lots of turkey-based meats. One of the side effects of my chemo is anorexia because it takes away your appetite. So I take it very seriously that I need to eat well.

And while in the rinse cycle, I may need some medication to “soften” the remaining side effects. Some of these are anxiety and minor pain. Because of my catheter, I’m not only experiencing pain from the chemo (which just feels like twinges in my abdomen), but I’m also having various pains from the rubber tube in my Urethra Franklin. (← My husband gets all the credit for that joke.)

I am also still immuno-compromized, so I have to be very careful to whom and what I expose myself. No parties. No shopping malls. No grocery stores. No raves. No mud wrestling. (Just checking to see if you’re still paying attention LOL!)

Along with all those typical happenings of my rinse cycle, I have had the disturbing trend of things going wrong during this period. In my first treatment, I ended up in the hospital during the rinse cycle. In the next treatment, I ended up with what we thought was a UTI (Urinary Tract Infection) but what turned out to be irritation from the catheter tube itself. And since those are the only treatments I’ve had for this regimen, I’m 0-2.

Tomorrow I go for my third treatment. I’m also having my catheter changed, so I’m crossing my fingers that this will help solve some of those issues. And I’m hopeful that as time goes on, I’ll know more and more what to expect and will be able to anticipate problems before they happen and take measures to alleviate them.
sunny spring bunnies

On another note, I enjoyed a short but entirely fabulous visit from my Mom and my sister Julie, which was a great addition to my treatment regimen. We overdid things a bit, but overall it was wonderful to see them. Which got me thinking that maybe this is exactly what I need - a visit at the end of every rinse cycle. Who’s next?


Stay tuned for.....you guessed it.....the Spin Cycle!