a light duzting of dizappointment

Since my last post (in which I described feeling like crap), I have been doing great! For the most part, I have energy, my tummy is cooperative, I’m not miserable, I’m sleeping well. And it turned around just in time for my special visitor, my BFF Kimie who came all the way from Scotland by way of Pittsburgh. We had a great time together, as always. We shopped. We found delicious vegan cookies. We drank soy lattes. We gossiped. We laughed. We made trouble with the mall Santa. Of course, the time passed too quickly, but I am thankful 1.) that she came to see me, and 2.) that I felt well enough to really enjoy my time with her. Now if I can just figure out a way to move Scotland a little closer to the US.... And why is it that we took no pictures of the two of us?

The Tuesday after she left, I headed to Boston for another CT scan to check the progress of my treatments. If you recall, a little over six weeks ago, I got the fabulous news that after just two treatments, my tumors had shrunk in size about 36%. I remember getting that call, how it felt to hear that what I was going through was worth all the chaos and discomfort and trouble. So it was with that fresh in my memory that I happily drove to Boston, drank the raspberry flavored barium concoction, and cheerily lied still for my umpteenth scan.

In my mind, it was going to be spectacular. I was going to hear how amazed my team was by my progress, how again my tumors had shrunk beyond their most optimistic hope. I anxiously waited for the call from my research nurse. When the phone finally rang, I couldn’t wait to hear the good news. Instead I heard that there was basically no change, my tumors were pretty much holding fast at their current size.

Anyone who has dieted for any length of time knows the feeling: you lose pound after pound until you hit a plateau, and then there you sit. You’re still dieting, you aren’t cheating, you exercise daily, you forgo the morning donut. But you’re stuck at THAT weight. I look at this as my tumor plateau. I will eventually move from this spot, but for now this is where I am. 

And so, it is with a lack of success euphoria that I head off to Boston tomorrow morning for Treatment 5. Despite the mild frustration, I’m oddly excited to get it over with because it means that I’ll be one day closer to seeing all the Christmas company - the Tall Man, my sisters, one brother-in-law, two nephews, a niece, and the returning cousin and fiancee. And this makes me very happy :)

If you don’t hear from me before then, I hope you have an enjoyable holiday, full of good food, good company, and great memories. I know I will!

mizery lovez company

Sometimes, even the most chipper of us have a bad day. Sometimes, we have a few bad days in a row. And that is where I am.

This treatment cycle - number four was on November 23 - has been particularly rough. I don’t know if it is because the holidays are upon us and it makes me sad to be sick at this time of year. I don’t know if it is because I’m just getting mentally worn down and sick of being sick. I don’t know if it is because the cumulative effects of my chemo are making it worse as time goes by. I suspect it’s a combination of all three.

So, positive upbeat optimistic defiant funny little me has been, in a word, miserable. How miserable? So freaking miserable that I’m fantasizing about how lovely it would be if I could just puke. I literally close my eyes and remember fondly days of food poisoning when I could just throw up until I felt better. But as I have said many a time, I was blessed(?) with a strong constitution, and therefore:
I. Do. Not. Puke.

Funny story. When this whole process got started, my biggest fear would be that I would in a state of constant vomit. I had nightmares about it. I worried about what I could eat that wouldn’t be too gross when it came back up. And now? F-that. Now, all I wish for is the ability to purge all the bad feelings away. (In retrospect, not a funny story at all.)

But I know this will pass. I will have better days. I will smile and laugh and be happy again. I will enjoy the company of my BFF when she gets here in two days for a visit. And I will, eventually, write another quippy feel-good blog that you will be glad you read!

Until then...

viewz, reviewz, and number three down the drain

For those of you that haven’t had the pleasure to visit RWF where I’m staying, I would like to share the views from my bedroom windows.

These two are from the windows facing east - when I first got here, the now-bare tree was covered in beautiful yellow and orange leaves. Alas, it is now naked.

← 

This is what I see from the south facing window to the left of my bed.

→

And this is what I see from the south facing window to the right of my bed. If you look closely, you can just see the ass of my mom’s horse Chakota. For some reason, whenever I try to get her picture from the window, this is the side she gives me.

It was cold the morning I took the pics (in the high 20's) so the windows were a bit fogged up!

I went to Dana-Farber on Tuesday for my 3rd treatment. There was an unexpected change in driver as my cousin Bill is still fighting off something he caught last month, so friends Anne & Jack jumped in at the last minute (thanks again!). Jack, you can do the driving anytime!

I visited with Kelly T, my nurse practitioner. She is very nice and I find her easy to talk to. This time, she handed me a wonderful report that made we well up with tears. I knew I had a good CT scan result, but to see it in writing was again... overwhelming. It was a major decision for me to uproot my life and come here for treatment, and this piece of paper has proved that it was the right thing to do. I am filled with new hope that I WILL WIN!

Here’s another view for you - the view of my doctor’s office. I am ever so thankful that for this go-round, I have not once had to put my feet in any stirrups, or disrobe in any measure. 

I was worried about my counts being high enough to get a treatment. I get blood work every Tuesday, and typically on the 2nd Tuesday after treatment, my Absolute Neutrophil Count (or ANC) is very low. A normal range is between 2000 and 6400. On October 26th, mine had plunged to 160. This mean no contact with people, no crowded places such as stores or movie theaters, and if I did need to go anywhere (for instance, the CT scan I had two days later), I would need to wear a mask. My favorite. It also means that if my counts didn’t go up to an acceptable level by my treatment day, they would have to postpone it. I’m sure you understand that it is important to me that I keep as closely to my schedule as possible, so postponement is not something I would take to with a smile. I was very happy to find that my ANC had bounced up to an unprecidented 7410! Yay!!!

Anne & Jack were free to leave, and I was off to the 10th floor for my infusion. Of course, there would be a wait while they mixed my chemo. In the interim, I had some lunch and listened to the audiobook of “The Girl with the Dragon Tattoo” (I’m not quite finished, but I recommend it highly). When they finally took me in, I got a chair in a corner with yet another pleasant view.

I had a new infusion nurse - Tracy. She was keen to get started, as they close at 8pm, my infusion takes about 5.5 hours, and it was closing in on 2pm. This is what my IV pole looks like at the beginning of the process.

I kept myself busy. More of the audiobook, TV, internet, nap. Several trips to the bathroom to pee out the over 3000cc of fluids that are being forced into my body, not including those that I drink of my own accord, plus the soup I had for lunch. I wish sometimes I had a pedometer that would track my steps to and fro the restroom pushing along my IV pole, which by the end of the day looks like I’m really some sort of sci-fi FX puppet hooked to hydraulics.

The day ended early at just before 7pm. I wasn’t as tired as last time, maybe because my counts were so good going in, maybe because I didn’t have a phosphorus deficiency, who knows. Still, I napped most of the way back to RWF and was eager to go to bed. 

So, there you have it. Three treatments down, an AWESOME review of my progress thus far, and several scenic views. 

Until next time...

thirty-zix

What’s so special about 36?

1. It’s a perfect square
2. It is the number of inches in a yard
3. It is the number of gallons of beer in a standard UK beer barrel
4. It is the atomic number of Krypton
5. It is a perfect score on the ACT

and...

most importantly...

6. It is the average percent reduction in tumor size that I have had after just two treatments!!!!!!!

Let me say it again:

After just two treatments, my tumors have reduced in size an average of 36%!

Which makes for a very happy Linda :)

little rabbit foo foo and a big number two too

hare today, goon tomorrow

Here’s a little history of my hair:

Weeks before my first treatment way back in 2008, I got a short easy haircut.









I didn’t cut my hair after that (except for one trim) for two years. This is how long it got.

The day I was re-diagnosed and learned that yes, this time I would lose my hair, I cut most of it off.

Two weeks after my first chemo, Tom got a 20-year payback and gave me a righteous mohawk! By far, my favortite look ever! So much so, that it deserves two pictures!

Sadly, only three days after Mohawk Day, my hair started to fall out. So MT Bee shaved it off. And now, it’s really falling out. I am bald. My eyebrows are following suit, and soom my eyelashes will go.

Great start to an awesome Uncle Fester Halloween costume - now where did I put that lightbulb?







Good side to losing all your hair:
No matter how cold it is, no need to blow-dry after a shower
Bad hair day? Not for me!
No pesky shaving
Gray roots? What roots?
Hats are kinda cute

the longezt number two of my life

Now for the nitty-gritty of this posting - I had my 2nd treatment yesterday. Before I say anything about it, let me just give a giant SHOUT OUT to MO Leo for driving and taking my mom to visit Gloucester so she wouldn’t have to sit next to me the whole boring long time.

And how long of a day was it? We left RWF at 6:45 am. Arrived at Dana-Farber at 9:00. The day was schedule to go as follows:
9:15 - blood work and urine sample
10:00 - see ARPN and Research Nurse
11:00 - Begin Infusion

Did it happen that way? Not at all.

I got in to get my blood work pretty quickly. Paula, the nurse that does the blood draws, was nice enough to let me go pee in a cup first because I had been drinking Gatorade the whole way and I knew to hold it until I had cup in hand. There are bathrooms scattered all around the floor, but the first four I went to were occupied. The 5th was open! I rushed in, unscrewed the cap off the pee cup, and in my haste dropped it in the toilet! Crap!!! Not only did I have to pick it up out of the [clean, unused] toilet, but by this time I really gotta go. I had to wash my hands (making me have to go more) and go back to Paula to get a new cup. I practically ran back to that same bathroom to find - someone was in there. I raced around and the next one I tried was open. Filled the cup. Breathed a sigh of relief. Aaaaaaah. She got my blood. Off to see the ARPN.

Got in to the ARPN pretty much on time. It was around 10-ish. It was my first time meeting the ARPN and she was very nice. We went over all my side effects, the most pronounced of which is the leg pain. She gave me some new prescriptions for that and talked about other strategies if those don’t work out. This would be so much easier if I would just say yes to the narcotics, but none for me, thanks. The Research Nurse was there too who is also very nice.

Dexamethazone is a steroid that I have to take in advance of chemo to help counter some of the side effects that I might experience. Up until this time, I had always gotten it via IV. And let me tell you - I love the stuff!! I feel like I could climb a mountain after getting it. Or run a marathon. I’m awake, I’m alive, I’m talking talking talking. BUT this time, I was taking Dex in pill form: 20 mg the night before, 20 mg as I was leaving in the morning. So while I’m sitting with the ARPN, I notice that the Dex is starting to kick in. I was talking. And talking. And, oh yes, more talking. I couldn’t stop. She’s trying to listen to me breathe, I’m talking. She listening to my heartbeat, I’m talking. I’m filling out my study-required life survey, I’m talking. Thankfully, they are patient and seem to like me :)

Next I was off to the 10th floor. Last time, I had to go get re-weighed and height checked up there because the chemo drugs are given based on body mass. I was expecting this again, so Mom went up with me while MO Leo waited for us in the cafeteria. We sat and sat and sat. Finally, Mom went down to sit with MO Leo and I was still waiting waiting waiting. Finally, I asked the lady at the desk if it was much longer and she said they only recheck your weight and height the first time, and I was next in line for chemo. But I was hungry! I wanted to go eat too! It was now 11:30. I called down to Mom to see if she could bring me up a bacon sandwich on dry toast. And then my Research Nurse came to tell me my phosphorus was low and they can’t do the chemo until it is at an acceptable level. She had me take two pills and come back for blood work in an hour. (If that doesn’t work, we’ll try two more pills and more blood work in an hour, and if that still doesn’t work, you’ll have to come back Friday.) I took the pills, and went down to the cafeteria.

My bacon sandwich was wonderful. But I was still hungry (another side effect of the Dex.) So I got a shrimp California roll and a Red Machine Naked Smoothie. At 12:40, I went upstairs to have my blood checked. The results would take 30 minutes at least. It was the day after a holiday and things are a bit backed up. They gave me a pager so I’d know when they got the results. I did some work on my netbook (thanks, Jeff) and some facebooking and then - beep beep beep beep beep. Good news! I was sufficiently phosphorescent to get my chemo!!! (Was I really that excited?) It was just about 2:00 when I was all hooked up and fluids were dripping.

My first infusion took almost 8 hours. This one needed to go a bit more quickly because the 10th floor closes at 8pm. That gave us 6 hours to work with. When you get there, they put your name on a board with you Estimated Departure Time. Mine was the latest. It went a little quicker because I wasn’t getting IV Dex, and my Avastin was 60 minutes this time instead of 90. Plus, she overlapped some of the hydration. So I actually left the 10th floor at 7:30! During those hours, I crocheted a little, watch TV, played on my netbook, but mostly I slept. When it was time to go, I was beat. I felt like when I was a kid waiting for the Monorail to leave the Magic Kingdom, practically asleep standing up and having to lean against my Mom to keep moving forward. What a difference from last time when I was all amped up to drive myself home!

I had a little nausea in the car, which could be the cumulative effects of the chemo, but could also be carsickness. Either way, I took a Compazine and tried to sleep. We got home at 9:45, just in time to miss the Goo Goo Dolls, but not the eliminations on DWTS. (Why am I always missing the Goo Goo Dolls?!?)

And now, I will take it easy. Rest and stay hydrated and rest and eat well and rest.

Thanks for reading my blog - it makes me feel like I am not alone in this battle when I consider that you are all part of my army ♥

Until next time...

crushed toez and picklez

This week, I wrote a new chapter in my Cancer Book: I started chemo. The BIG chemo. My mom and I trekked out to Dana-Farber at 5:30 Tuesday morning. We arrived late for my 7:30 appointment because of the can’t-believe-it-till-you-see-it Boston traffic. I got whisked through seeing Dr C, bloodwork, vitals - with a long pause for breakfast - and then off to the 10th floor for the infusion. The over 7-hour infusion!

I was hooked up at around 10:15. Got a big dose of fluids for hydration and pre-meds to head off any reactions the chemo drugs might cause (Benadryl, Decadron, Xantac, Aloxi, Emend). Then it was time for chemo:
3 hours of Taxol
30 minutes of Mannitol
30 minutes of Cisplatin
90 minutes of Avastin

I spent most of the day in varying degrees of recline. My mom sat with me and we chatted some, but mostly read or watched TV. If you can imagine how boring it is to be hooked up to an IV drip for that long, imagine being the person sitting next to the one hooked up to the IV drip. At least I was in a recliner and could get comfortable. My mom was just sitting in an ordinary chair. Waiting.... Waiting..... Waiting.........

I finally got unhooked at 6:00. I was amped up enough from the Dex (Decadron) to drive home, but when it wore off the next day, baby did it WEAR OFF. I was (to use Pops’s phrase) wrung out. Tired from the effects of chemo, but compounded by coming down off the Dex. And then, the pain began.

My old neuropathy was simple. I felt like I was still wearing socks after I’d taken them off, and my feet were always cold. This time, it hurts. The bottoms of my feet are numb. But the tops of my feet feel like someone is standing on them (and no, that isn’t because a wonderful Rottweiler has parked herself on top of me). My knees and ankles feel like they are being squeezed in a vice. I had trouble sleeping the first night of that, but then my Mom put on her Mommy Hat and rubbed my legs and feet before bed and it made the pain go away. (Thank you SO MUCH Mom!!! You’re the best!!!) (And yes, I do know how spoiled I am!)

What I had been dreading the most - the nausea - hasn’t been too bad. I have had moments here and there, but MO Leo taught me the pickle trick. Apparently, there’s an old naval remedy for seasickness which is, basically, eat a pickle. I’ve tried it and it seems to work. So far, my nausea has been very minor and not lingering. I’ve had a few pickles here and there, a few anti-emetics here and there, but so far no puking. So far.

Today is a good day. The neuropathy isn’t too bad, mostly numb, no real pain. I did some chores and walked the dog and I might even go to the movies tonight. Tom’s coming to visit so I’m sure we’ll play some cards. And the best part? I still have two more weeks before I have to go do it all over again!

And see? I’m still smiling!

a cog in the mazhine

Tuesday morning, I set out for my third trek to Dana-Farber. I did the driving, and my Mom and MT Bee came too. During the week prior, I had received a 20+-page document detailing the clinical trial that I came here to be part of; I had poured over it several times, highlighting my questions as I went. I brought that with me, along with a stomach-full of apprehension. Oh, and I also brought my Java Blue Maggie Vera Bradley that I bought at Goodwill for $3.

We arrived with enough time to take the scenic route through the city, and still enough time to eat lunch in the D-F cafeteria. My turkey and ham sandwich with mustard, lettuce, tomato, and pickle was tasty, but it had to share room in my tummy with the aforementioned apprehension. I was quite full!

I again met with Paul who took my blood, and then it was off to see Dr C and Nurse C. My Mom & MT Bee came in with me so that they could have the chance to ask their questions and give voice to the apprehensions filling their stomachs (though neither of them really asked much). Dr C did much to allay my fears (albeit while giving rise to new fears) and I felt comfortable signing on the dotted line.

There was still some checking that needed to be done: bloodwork, urinalysis, EKG (which I actually had to go back today to redo).

So.....

Congratulations! I am now a cog a participant in the GOG-0240 Clinical Trial:

A Ramdomized Phase III Trial of Cisplatin Plus Paclitaxel with and without NCI-Supplied Bevacizumab versus the Non-Platinum Doublet Topotecan plus Paclitaxel with and without NCI-Supplied Bevacizumab, in Stage IVB, Recurrent or Persistent Carcinoma of the Cervix

How’s that for a mouthful?

I have been randomly selected to receive regimen 2: Cisplatin, Paclitaxel, and Bevacizumab. On day 1, I will get the Paclitaxel (hereafter referred to as Taxol), and on day 2, I will get Cisplatin and Bevacizumab (hereafter referred to as Avastin). It is a 21-day cycle of treatment, so I’ll have
treatment every third Tuesday and Wednesday starting this coming Tuesday, September 21st.

And I even got a prize for my participation - MT Bee gave me an exclusive Dana-Farber Cancer Institute Crystals of Hope bracelet. Isn’t it pretty? Each color represents a different color cancer ribbon: cervical is teal. So now you know what color ribbon to wear on your lapel when you give your Academy Award acceptance speech!

And that, dear readers, means that the next time you hear from me will be after my first treatment. I hope I’m still smiling :-)

Oh - I almost forgot to mention my adventures in purple. Hair, that is. My roots were growing out, and for those of you that haven’t seen me in a while, my natural hair color has taken on a decidedly, shall we say, smoky flavour. So I had the bright idea to dye my roots purple - after all, my hair will fall out soon. Well... much of my scalp is bright purple. Most of my hair is still black. My roots are still gray. And only a very small bit actually turned purple like it was supposed to. Live and learn!

Until next time...

three peepz and a cow

The day of my CT scan, I dealt with three people.

First, I had to have blood drawn.  The man called me in to the Blood Draw Room and had me sit in a comfy blue chair.  He wasn't just drawing blood - he was putting in a Huber needle so that during my CT scan, it would be ready for them to inject the contrast dye. There was some confusion over the paperwork: he needed a report from when the port was put in that would indicate where in my jugular vein the tip of the catheter was placed.  The ID card and paperwork I had with me didn't say anything about that.  So he made some calls, I made some calls, he made more calls, and finally the report was faxed and I could get my Huber.  And I almost forgot to mention - this guy complimented me on my shoes.  Love that!

Second, I had to have the CT scan.  In preparation, I had to drink Barium.  Now you might remember from earlier posts, I have had to drink Barium before.  It was chalky and gluey and made me gag.  But now, there is a new liquid Barium (new to me anyway) that comes in a little vial.  You pour it into a bottle of Crystal Light and aside from a slight aftertaste, it is really easy to drink.  I had two of them and I was ready to be scanned.  The technologist brought be in to the CT scan room and had me lie down.

Third, a nurse in the CT scan room hooked me up to the contrast.  I had two images taken before the contrast, then the nurse came back in and actually injected it, then I had two more images taken.  And that was it.


And do you want to hear the weird part?  The CT contrast nurse was named Jeff, the CT technologist was named Kim, and the blood draw guy was named Paul.  So for my first day of stuff happening at Dana-Farber, I dealt with Jeff, Kim, and Paul!  This made me happy :)

The other thing that made me happy was this inexplicably hand-printed cow.

I go back to D-F on Tuesday the 14th to meet with Dr C and Nurse C (Nurse C is the Research Nurse in charge of the trial I am going to be part of) and we will go over all my questions and get all the papers signed. And if everything goes to plan, I should start chemo the Tuesday after.

I'll let you know...

somethingz different...

...I can't quite put my finger on it...

I heard voices when I woke up this morning. Voices of my Mom. And my MT Bee. And it was cold outside. In the 50’s, I’m told. This doesn’t feel right. This feels like.... And sounds like.... New England!

Surprise! Surprise! It IS New England! Yes, I am here in Ye Olde Andover. Sitting in my 2nd floor room with pitched ceilings. Got my favorite books. Got some warm clothes. Got my giant red pillow. Got stuff to keep me busy. Got work. Got knitting.

After having a WHOLE LOTTA help packing from my family, my MO Leo drove me and my stuff here safely. We had two nice visits on the way up: one with the Tall Man, the other with MT Marie and the Boys-and-Boys. I was glad to arrive on Tuesday and get settled in.

My first appointment at Dana-Farber was on Friday at 7:30 am. When the nurse called to schedule it, I was told to be there by 6:45 in order to have time to fill out the requisite paperwork. Dr C, I was told, likes to be prompt. And so, we woke up in the middle of the night and were on the road by 4:30. My cousin-in-law Bill was our driver and after umpteen hundreds of trips to D-F with Pops over the years, we trusted that he would get us there safely and on time. Which he did - we even had enough minutes to spare to fit in a quick breakfast first!

Turns out, punctual Dr C was running late! But no bother. I immediately liked her; she was personable and thorough in her questioning. When the subject of the clinical trial came up, she felt it would be a great fit for me and was extremely pleased that I hadn’t had any treatment before coming up (if you remember, there was a possibility of a “boost” of radiation - lucky for me I canceled that). I had done my research, and she was impressed with my tendency toward compulsivity. Click here to see a short video - I bet you'll like her too!

Tomorrow I go for a CT-scan and blood work. Then the following Tuesday, I go back to meet with the person running the clinical trial. The trial drug is Bevacizumab, which I can for some inexplicable reason just this moment remember how to pronounce (bĕ və sĭ´ zō măb), that also goes by the name Avastin if you’re in a Google sort of mood.

I don't know how soon after that appointment I will begin treatment, but I'm ready to get started like right now! C'mon, Dr C - let's get a move on!

Before I go, I want to send a big warm HUG to all the people in Florida and other southern states that I will be far from over the next however long. The tears may have dried, but I am still missing you terribly!

Until next time.... ♥

healing purple winning hamzter

Another week has gone by in my latest journey through the world of cancer.  Just one week, but so much to write about.

healing
I'm still recovering from surgery I had four weeks ago.  There are times I find that I have a pain so sharp that it is difficult to take a deep breath.  The first time I experienced this, I was sure I'd somehow broken a rib.  But then I came to my senses and realized that it is just pain from the muscles that are still healing.  They warned me about this, that it would take longer to heal this time due to my past radiation, that it would be at least six weeks before I could resume - shall we say "strenuous" - activity.  I also discovered that the pain is worse if I attempt to sleep on my left side during the night or if I pick up/carry anything too heavy.  Now that I know, I seem to be managing fine.  

purple
My port has healed nicely.  I still have to keep it bandaged, but it is remarkable how nicely the incisions have closed up.  The big one where the port was actually inserted has an obvious cut.  But the other one, the one up toward my neck where they attached the catheter to my jugular, you can't really see that I was cut there.  It has completely healed.  And I've learned some interesting things about my port.  Last time, I had a plain ordinary port.  This time, I have a Power Injectable Port.  And what does that mean? That means that if I ever have to have a CT scan with contrast, they can inject the contrast dye right through my port.  Which will make my follow-ups go that much smoother.  And did I mention it's purple?

winning
And speaking of purple, my tattoo is healing nicely.  A few people have asked, so here's the story of how that came to be:
I've known all along that I will beat this cancer.  In those words: "I will beat this."  But on Tuesday Aug 3rd just after lunch, my BFF made a very angry post on the Facebook that stated I hate you cancer ... you will NOT win this time you MOFO and at that moment, my mantra changed from "I will beat this" to "I will win."  And on that same Tuesday Aug 3rd at approximately 5:00 pm, I walked into Tropical Tattoo and said "I want 'I will win' on the inside of my right wrist in girlie swirly letters."  The tattoo artist, covered in tough manly biker tattoos, was confused by my "girlie swirly" description until I directed him to the font Gigi (if you didn't know, I am a total font geek) and the rest is history.  I chose that location so that I will be able to see it easily any time I lose focus.  Because let me assure you - I WILL WIN!

hamzter
And finally, I have an appointment at Dana-Farber on Sept 3rd.  The clinical trial I hope to be part of is one that tests the effect of the addition of a biological agent with the standard chemo given for recurrent cervical cancer.  I didn't ask my doctor too many questions about this biological agent; frankly, I was just happy to have found a study related to my brand of cancer at the cancer center I preferred to go to.  If they were testing the effect of eating a Popsicle while standing on your head, I probably would have gone for it.  But getting back to the biological agent...  In reading over the paperwork again, I came across this statement in a long list labeled "Patient Characteristics":
No known hypersensitivity to Chinese hamster ovary cell products This of course led me to Google, which led me to Wikipedia, which explained that biological agents are grown in Chinese hamster ovary cells, sort of.  So, if I am chosen to be part of the clinical trial, and if I am put into the group that receives the biological agent, then I will be infused with hamster.  Sweet!  I knew there was a reason I ♥ Agnes so much (despite her past resistance to said ♥)!

And there you have it.  In short, muscles healing, purple port, I will win, and I may be part hamster.

I'll keep you posted...

coituz you, canzer

So today was the big day - the Human-Cyborg Transformation. Last time, I was a nervous quivering wreck. This time, I was... Fearless. Defiant. Angry. Determined.

MT Jeanne, angel that she is, arrived right on schedule at 6:30 am to get me to the church hospital on time. We arrived 15 minutes early and to my delight, I was whisked right in. Didn’t even see the inside of the waiting room. I willingly put my things in locker #9 - superstitions be damned! (I did, however, breathe a sigh of relief that at least it wasn’t - gasp - locker #8. That might have sent me down a different mental path altogether. But that is a topic for another time.)

I got IV’d without incident and MT Jeanne and I chatted until about 8:45 when she left to do something other than sit in a hospital waiting room. After a short doze, Nurse M came to take me down to the ominously named INVASIVE RADIOLOGY room. I met the rest of my team - Nurse J, Nurse D, and Dr G. And they met my hives. Apparently, I have yet another antibiotic to add to my growing list of allergies, this time Ancef. Benadryl helped the itching go away, and also made me just a little bit loopy.

Let me stop for a moment and just interject that my Cyborg Transformation Team ROCKED!!! Total 180 degree change from last time. Dr G was friendly and kind and didn’t try to have it his-way-or-the-highway. The nurses were very accommodating to explain everything non-invasive they were doing to me so I didn’t freak out when they started strapping me in and taping me down. It was, dare I say, almost pleasant.

Back to the loopy... I had mentioned that I always get a double dose of my dear sedative friend Versed: the first dose makes me talk talk talk, but the second actually does what it is supposed to do. I don’t know if they got to the second dose or not, since I was already half gone with the Benadryl. I had prepared them for the onslaught of verbage, and instead laid there quietly and rested while they did their thing.

I remember being wrapped in plastic (what they referred to as my tent). I remember the cold alcohol wipes. I remember a tiny needle stick. And then I remember a snippet of a conversation, recreated here to the very best of my ability:

Nurse D: I would never say that to my fiance
Me: At least not during coitus
Dr G: (laughs) So you’re awake?
Nurse D: What did she say???
Dr G: She said “at least not during coitus!”
(laughter)
[I have a follow up exam on Aug 16 - I’ll be sure to ask for clarification.]

After that, I thought they were still prepping me when Dr G poked his head under my tent to say I was all done. I could not believe it! No trauma! No anxiety! No angst!

I went to recovery, got dressed, had a snack, chatted with Nurse J for about an hour; and then it was time to go home.

And now, I have the inevitable Human-->Cyborg Transformation Pain. It will go away as soon as the human in me accepts and embraces the mechanical in me. Until then, I’ll be popping Tylenols and taking it easy. My weekend company (4 out of 5 Danforths) are on their way. I’m looking forward to seeing them all, even though I don’t know where to put them in my teeny-tiny apartment!

Next on deck - an Aug 12 appointment with Dr F, and waiting to hear from Dana-Farber regarding the clinical trial I’m hoping to be part of.

I’ll keep you posted....

I am Cyborg. And I will win.

itz my hair an you cant haz it

So, chemo, you want to take my hair? Well suck eggs - I took my own hair!

The long and the short of it is this: my cancer is back. Old cancer, new location.

Not.

Good.

Because of my past radiation treatments, surgery is out. This is the one bright spot. Radiation this time is likely also out, although I’m waiting to get the official word on that. The only definite course of action will be chemo and lots of it. This time won’t be like last time. This time, I won’t be able to pretend that everything’s alright. This time, I will be sick. This time, I will lose my hair.

(Ha! Beat you to that one...)

I’m hoping to be accepted into a clinical trial being held at Dana-Farber Cancer Institute in Boston. My Auntie lives not far from there, and my Mom is staying with her for a while, so I’d be able to be with both of them and Miss Katie Bear. Yes, it would be a big pain in the tuchus to leave my job and pack up my apartment and move away. But given the circumstances, it makes the most sense.

This Friday, I have the lovely - LOVELY - task of getting another port. In case you’ve forgotten what a delight that was, click here to take a walk down that particular memory lane.

Next week, I hope to meet with Dr F who will tell me definitively if I’m getting a boost of radiation or not.

And after that, I might be holed up in my little 1-bedroom all alone for six miserable months. Then again, I might be pahking my cah in a different garahge. Who knows?

Stay tuned...

once more, with feeling

I was put under the robot-held knife the morning of July 22, four days ago. My sister Julie drove down from GA to be with me, so she had the honor of making sure I arrived at the hospital promptly at 5:30 am. I was all ready with my big girl pants to get the IV in the crook of my arm, but to my surprise (and surprisingly, my horror) the nurse wanted to put it in my hand. Before long, I had a double-dose of Versed and was vaguely aware of being asked to take deep breaths.

In recovery, they told me I had to wake up, and I heard them talking, saying that I was taking a while to come out of it. But once I did wake up and notice the time, it wasn't too much after 11; the surgery must not have taken too long. They got me in a chair and gave me apple juice and Saltine crackers. I had talked to Dr M ahead of time about not wanting to take Percocet, so he prescribed LorTabs for me instead. The nurse had me take one, but it made me feel sick so since then I've taken just Tylenol.

I'm told that Dr M was able to remove the entire "offending" mass, which includes a lymph node or two. It must also have included some nerves, because now I have a spot on my right thigh, about the size of my hand, where I feel absolutely nothing at all. It disturbs me, this, but I'll get over it. He also took some fluid from an ovarian cyst.

So now, random samples of my innards have been forwarded on to what I can only assume is a top-notch team of crack pathologists that will work night and day to find out what is vexing me. And I shall find out at my follow-up appointment on August 2nd. Until then, I'm left to wait. And so are you...

again, I gotta deal with all of this?

I'm back, boys and girls, and I'm not happy one little bit.

It's been a while since I've written. A while since there has been anything to say. I've had six uneventful follow-ups since I finished my radiation/chemo. About 18 months of feeling like - hey, maybe I really did beat this thing.

And now.... not so much.

Part of my routine is a CT scan every June. The most recent one showed something that wasn't there before: a 1 to 1.5 cm mass on the right side of my pelvic wall. In a place that might normally be inhabited by a lymph node. The OIQ (Object In Question) could be nothing. Could be scar tissue, or an overactive lymph node, or something that was there all along but just got missed by scans past. But given my history, Dr M didn't want to take any chances, and I agreed. Let's find out what it is exactly and deal with it asap.

Initially, we both liked the idea of a needle biopsy (inasmuch as one can "like" that sort of thing). Unfortunately, the OIQ was in such a location that it would be difficult to get to with a needle. So gears were switched to a surgical biopsy, which I was none too pleased about. Because if you remember, my dear readers, surgery = prep
and
prep = unhappiness

And it isn't just the prep, it's the healing and the pain and the not being able to eat or carry things or drive or whatever. For my last go-round, I was living with someone that was there to do all those things; now I'm on my own. Nobody to fetch me a glass of water at 2am. Nobody to run and get the mail. Nobody to whine to at whim.

THUS, you can imagine my relief when I received word that Dr M was just not comfortable doing a surgical biopsy, that doing surgery on a radiated area has its challenges and he didn't want to go that route unless it was absolutely necessary. Instead, he would like a PET scan.

Now, contrary to the images it conjures, nobody waved hamsters or turtles or cats or dogs or bearded dragons over me. PET scans, I have learned, look at energy given off during the absorption of glucose: cancer cells tend to burn glucose at a higher rate than most other cells, so by looking at what areas 'light up', we can see what areas might be actively cancerous. I had mine on Monday.

The scan itself was uneventful - I fell asleep during and dreamed of ice cream. The - here's that word again - prep was annoying but nothing drastic: no carbs for 24 hours prior, no physical activity for 48 hours prior. And the morning of, you get a nice injection of radioactive glucose. That injection was, I assure you, no fun at all. I tried - I really did. I put on my big-girl pants and let her put that needle right in the crook of my elbow, the very place that just 2 short years ago I didn't even want another person to look at, let alone touch. Let alone stab. So I was doing good. IV went in without a hitch. Nuclear liquid went in, no problem. IV came out, all was..... woah. Wait a minute.... I'm not feeling so........... I can sum it up best by saying that my blood pressure was so low that three times the machine could not get a reading, and I have a vague memory of someone saying my pulse was 33.

And then it was time to get the results. This morning. I knew before Dr M could tell me anything that it wasn't good. The nurses were a bit too nice, a bit too sympathetic. So it didn't completely surprise me to hear that yes, the PET scan showed a bright spot in the same place they saw the OIQ in the CT scan. And since he's not comfortable saying Yes This Is Cancer Again based on what he sees in the scan, Dr M wants to get in there and have a good look. And this means - say it with me - SURGERY. Mother clucking, some-in-a-batching, ass-sucking surgery. On Thursday.

Which means what? PREP! If I was the swearing type, I would be letting loose a string of expletives that would take the wax out of your ears. Two 10-oz bottles of that loveliest of all laxatives, cherry flavored magnesium citrate. I look forward to spending my Wednesday perched atop a porcelain throne. Oh. Joy.

I'll keep you posted...