The Hardezt Blog to Write

So by now, most of you know that I have left Virginia (with Jeff’s complete blessing) and have settled in nicely in the spare bedroom in my Mom’s condo in Pompano Beach. As for my physiological and cancer status, welllllll...........that’s a bit much for my brain to process.

I have stopped all my treatments, which needless to say, means I’ll be giving a little bit of a break to my body….well, I guess a BIG break to my body.  My family is very supportive of this as well as Jeff. ---technically he is family now :)  What does it mean that I have stopped treatments? Well, it means for one thing that I am not actively taking any medicines to slow down the progression of the disease. This does not mean that I am off ALL medications. I still take handfuls of pills in the morning and at night as well as suppositories and injections and pain patches (oh my!). My appetite isn’t so good so I have lost 60+ lbs which has left me looking like the bride of SkeletorTM.

But what this really means is that I will be living 24/7 in my big-girl pants, and instead of that time being measured in years, it’ll be measured in months. Now that I’m in south FL I would like to see as many people as possible in the time I have left. Unfortunately, I don’t know how long that will be. This is why I have been pestering so many of you for visits, but then we find out that the visits are very tiring so it’s a double-edged sword. Damned if you do, damned if you don’t.  For now the easiest way to get in touch with me is with phone calls and emails. I am very rarely far away from my phone. If I don’t respond right away, please don’t be offended, I take a lot of drug-induced naps.

So now, while I am not actively lying around and waiting, at times it feels like that’s exactly what I’m doing. Waiting. I am not well enough to do many things outside the home, and I find that it’s exhausting to sit and wait. And it isn’t just tiring for me, but also for everyone around me. I am sure I should have guessed, but I have been astounded at how frustrating it can be to be tethered to bags holding foul things that should typically be disposed of immediately. Just moving from room to room has started to require an entourage. Pillows, tubes, bags, pads, wheelchairs, canes, (and lately an inflatable swim ring) all now follow me from station to station. It is not glamorous. Though I am sure no one has been guilty of calling me ‘glamorous’ at any point in my life.

Things that used to come easy now come hard. I try and cook by scrawling out grocery lists and barking orders from the couch with modest success. I force myself to take the ride down 7 floors (I really hate that elevator) to go on a car ride and see the beach. I write in spurts or peruse FacebookTM. And I am sure this comes as no surprise, but I battle thinking I can do more than I am able. This means that sometimes I eat things that are a little too harsh or I try to walk too far or I talk too much and I end up paying a price….like having a red beach bucket (which I have punished more than any bucket deserves) under my chin or getting myself picked up off of the floor and searching for bumps and bruises. Point of note, though, I can still hold my own at Queen of Spades even against the healthiest of foes.

My daily joys have become much simpler but they have not disappeared entirely. I am particularly fond of the shows “Ninja Warrior” and “The Dog Whisperer.” (I realize that these two shows are not compatible at all, but they pass the time) I have developed an affinity for McDonaldsTM Sweet Tea and perfectly browned toast.  I am keeping Burt’s Beeswax in business by incessantly applying coats of lip balm to my shriveled lips. My phone keeps me updated pretty well and challenges me to a few games of Solitaire a day (yeah I know). And I especially get excited about a call or a message from The Tall Man. (pitter pat pitter pat)

The tattoo on my wrist “I will win” taunts me some days. I see-saw back and forth between defeat and inspiration. It is hard not to be angry at the disease that is working so hard to have its victory over my insides. But maybe by going down as gracefully as I can, I am winning in my own way. At least that (along with the drugs) helps me sleep at night.

In case you were wondering, Urethra Franklin and her group the Anal sphincters performed their last concert and it was pretty crappy.  


For bonus content be sure and check here. 

I had intended for this to be my penultimate (for those of you who don’t know what that means, pick up a dictionary) blog and for my last blog to be written as my obituary. But it is becoming increasingly clear that this will be the last thing I will be able to write. So I will just end it in this way.

Linda Rodrigue Pope

1970 - 2011

POMPANO BEACH, FL – Linda Rodrigue Pope, well-known blogger, wife, aunt, niece, sister, daughter, cousin, wannabe computer geek, amateur movie critic, semi-gourmet cook, control freak, and (some say) spoiled brat died today, September 20, 2011.

Linda was born in Connecticut, but spent her life moving her home base around the States of Florida, Kentucky, and Virginia. She also spent a good bit of time in the states of confusion, euphoria, hysteria, and grace.

She followed a strange and winding path to rediscover and marry the love of her life. What a pleasant surprise.

In lieu of flowers, donations can be made to anything but Jeff’s Firearm Collection Fund.

She is survived by her husband, mother, grandmother, and a ridiculous number of family members (sisters, nephews, niece, brothers-in-law, aunts, uncles, cousins, parents-in-law) and friends who love her far more than she could ever love them back. But she gave it her best shot.

"She's in Peaz at lazt"

Everybody please stop crying.

changez in attitude, changez in latitude

The best helpers ever!!!

My how things have changed! You may not be able to make a u-turn while driving in Richmond, but you can certainly make a U-turn health-wise.

The “endoscopic” procedure that I was getting on my birthday was actually a flexible sigmoidoscopy, which is a mini-colonoscopy. They had told me after the CT-scan that I did not have a blockage, but when they tried to do the flex sig they couldn’t get through even with a pediatric endoscope. That’s how bad the blockage was. What did get through was air that puffed me up and created pressure in my abdomen which in turn made me start throwing up. They were able (and did) take some biopsies.

They decided to put a stent in to open up the blockage. For the weekend they told me to drink some Lactulose which is a nasty gluey thick laxative, but it wasn’t helping. I was throwing up every night after taking my dosage of it.

Monday was Stent Day. They explained it was like a spring wound really tight that they would put into the blockage and when they let go it would expand and open up the blockage. Unfortunately, I was blocked around a corner, so they couldn’t safely put the stent in.

This led to a consultation on Wednesday (coincidentally also the day that my high school friend Alex was arriving). Doctor B explained that the cancer had spread to my colon and contributed to the blockage and that the next step would be a colostomy. This did NOT make me happy. Jeff was with me so that helped a bit. But still it’s hard to hear that you’re going to be pooping out of your belly.

My doctor initially scheduled the surgery for Tuesday but she was going to be out of town and a different surgeon would be doing the procedure. He came in and said he would do it Friday morning, which is a good thing because...

A normal colon                My swollen colon

A typical colon has a diameter of about an inch. Mine was under so much pressure that it had the diameter of 4-5 inches. If this had gone untreated over the long weekend it probably would have ruptured and I wouldn’t have made it. So when you look at the options (poop out my belly or not be here at all, I’ll take pooping out of my belly. Yes it’s gross, but I can handle it.

They kept me in the hospital over the 4th of July weekend. I wasn’t allowed to leave until I was able to clean and manage my stoma (the new opening in my belly). That was the difficult part because basically it is part of your intestines on the outside and it’s gross. It looks like a tomato. Click here for a bonus blog about my heirloom (s)tomato.

Another big change that has taken place is that Jeff and I decided that it would be best for me to go live with my family in South Florida. Jeff works 12 hours a day which leaves me at home alone 12 hours a day. With no car and limited mobility, that’s no picnic. Hopefully by the beginning of August I’ll be healed enough to make that journey. It’s not an easy decision but we both agree that it’s the best thing for right now.

So if you wanted to visit me in Richmond, get a move on. Time is running out. Otherwise, see you in Florida!


“If we couldn’t laugh, we would all go insane.” - Jimmy Buffet

long overdue

Wow, it really has been a while. Where do I start?

I’m having trouble concentrating as of late, which is part of the problem. But also it seems like sometimes I just have nothing new to say.

So now there’s something new:

I spent this past weekend in the hospital. And why? What for? I was in the hospital to get a CT scan.

I have, as I have stated before, issues with the fecal of it all. I tend to be constipated and the chemo and all the drugs I’m taking don’t help. But this time was different. This time, things were... well, I’m not going to get into the description but let’s just say I was having a new bowel related issue. And according to my doctor, if X, Y, or Z happened over the weekend, it was imperative that I be admitted and checked for a partial large bowel obstruction. And just my luck! X and Z happened, so off I went, dutifully obeying the orders of the ones in charge of my health.

I checked in on Saturday evening into the Palliative Care Unit. I waited until 11pm to see the doctors on call, who seemed confused about why I was there. They hinted that the CT scan will come as soon as it can, possibly in the middle of the night. Turns out, it didn’t happen until 3pm Sunday afternoon. In the meantime, I didn’t sleep, I was uncomfortable, I was miserable.

They had me on so many meds that made me feel wonky. Everything started tasting and smelling the same. Like the paper cup they had me drinking out of. Water, soda, popsicles, cereal, meatballs, jello, oranges, juice. It all tasted the same - and not good. And the smell. I know it was just me, a reaction to the drugs I was taking, but the smell that permeated the place was making me gag.

Now I am happily home. I had a really bad day on Tuesday, but since then I’ve felt a bit better. Not actually myself, but better.

Before all that, I skipped my chemo this month. I was supposed to have it on June 15, but when I went to the doctor’s that day they found that I was severely lacking in Potassium. Isn’t that what you get from bananas? I don’t eat bananas. So they hooked me up to an IV for 4 hours giving me potassium (which I must be back up to snuff on now because during my hospital stay they actually stopped giving it to me). They also gave me an x-ray to check for the aforementioned blockage, but they found nothing.

And speaking of the blockage, what it turns out to be is that I have a slow colon. A leftover from the radiation I went through in 2008 - you can read all about it in the bonus blog (<--click).

In the midst of all this, I have a Urinary Tract Infection. This is typical for those with indwelling catheters. But it doesn’t make it any more fun for me.

To be honest, none of this has been fun for me lately. It has been a big fat annoyance.

My birthday is tomorrow - I should be happy about this. 41 years old, 3 years surviving cancer, and yet instead I feel blah. Maybe this is because at 9:30 in the morning, I have to have and endoscopic procedure - YAY. What a way to celebrate, no?

The good thing is that it’s summer, and I have visitors to look forward to. A friend from high school will be here next Wednesday. A cousin and a nephew will be visiting sometime in July. I’m doing my best to entice the Griswolds away from their Georgia retreat. I’m hoping for a couple other cousins and maybe yet another nephew. As long as I’m awake, I enjoy visitors!

On a sad note, one year ago today, our family lost our beloved Pops. I speak to him often (usually when I’m going through a yucky procedure) but he hasn’t answered. I love him and miss him, and the family does not feel the same without him. Love you Pops!

az iz

I can’t believe I’m awake. This is the time of my cycle that I spend on the couch, sleeping the day away despite everything that might be going on around me (which is basically just TV). But no matter how tired I might be during the day, when I go to bed, I have this annoying phenomenon that occurs no matter what I do. I wake up just enough to start writing a blog in my head, which is very annoying because 1) I don’t have anything concrete to write on or with, and 2) I will likely forget my words of brilliance by the time I wake up.

But this time, I’m going to try to just go with the flow. Without revision, I’m going to try to somehow recreate the blog I wrote in my head. I’m not going to do any revisions, I’m not going to pull out my thesaurus. I’m just going to let the words fall where they may and we can all see why I shouldn’t write when I’m half asleep!

****************

April was a bad month, especially the end of April. I had major bouts with constipation, and on top of that I had a CT scan.

Jeff and I had been very worried about the results of the scan. I had been having pain that I’d never had before, specifically one spot in my groin that I know happens to be home to a tumorous lymph node. I had not had pain like that before - I generally have only had pain from this flipping catheter, but this was way beyond that. I was taking lots of medicine that was taking the edge off, but wasn’t really taking the pain away completely.

My doctors meet on Wednesdays to discuss scan results and where to go from here, so I knew I wouldn't hear from them until after that. And the longer I waited, the more it hurt. Jeff and I were getting pretty scared. In my mind (and his, and some others) the cancer was spreading. The pain was due to the spreading, and they were going to have nothing good to say. I needed to start thinking about legal documents - Advanced Directives, Health Care Proxy, etc. This was going to be bad.

So then the phone rang and it was Trish, my Nurse Practitioner. She said to me “you’re stable”. But I was sure I was mis-hearing her, or she called the wrong person, or something. I kept asking “Are you sure?” “You have the right person?” She was sure. I was stable, they were going to continue with the same treatment - Alimta. It made no sense to me. All this pain, how can I be stable?

I spoke to Trish again on Friday, and explained to her that I hadn’t had a number 2 in about a week. She suggested that I move onto the harsh stuff - Magnesium Citrate, what they give you pre-surgery to clear you out. Yay. I was gonna go visit Mems on Saturday, so I half-heartedly gave it a try on Friday, but when we got home on Sunday I decided THIS IS IT. I am going to crap today if it’s the last thing I do. I choked down that bottle of Mag Cit and lo-and-behold, crap I did. And do you know what? The pain was gone!

Every last bit of it! So what did I learn? Apparently, constipation makes your abdomen hurt! Who knew?

It’s amazing how much I’m learning about my body. And from now on, I’m going to listen to what the doctors tell me instead of second-guessing that I know when to take a laxative and when not.

Because do you know what? I am not a doctor! And I don’t even play one on TV!


So there you go. The “as is” blog entry that came to me as I attempted to fall asleep last night. Now maybe I can sleep!!!

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?

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!!!

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!

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!

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!

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.
Woo.
Frigging.
Hoo.

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.