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The Latest and Greatest… 3/11/15

Howdy!! Thanks for your comments, etc. Very nice to hear you are enjoying the BLOG. I can’t guarantee that any future writings can trump CHEMO 1, but we can always hope… the kittens will return, individually or as a litter… time will tell…

Here’s a boring, yet informative update:

Well, round 3 of chemo is rolling around in this cancerous wonderland. So far, so good. I feel pretty much the same as week one and two, luckily. I will supposedly continue to have the sensitivity to cold throughout my treatment, but I’m fine with that. I just may have to forgo flipflops for the spring/summer… and gloves, of some sort, may become a popular accessory. You will have to get your own cold beers for 7-10 days after treatments.

I usually meet with my oncologist each week before chemo. This week was no different. She just does a basic check up, let’s me know how my blood work looks. This week she was a woman of few words. I think she is afraid of me. She stated my blood work looked good. My cell counts looked good. Good enough for treatment is all I care about, really.

In two weeks, I’ll go back for round 4. However, before the treatment, I’ll have a CT scan of my abdomen (liver I assume). They will use the scan to compare to past scans from December and January (prior to my diagnosis), to see if the tumors are being effected by the chemo. They will look for them to be shrinking (or at least not growing-by golly).

Supposedly, at or around every fourth treatment there will be a scan similar to this, to watch the “trend” of the cancer. They just want to see that the treatment continues to work, as sometimes things can change and it can become less effective over time.

The most important part of this visit on my part was yet to come. Each time I meet with Dr. Amin, I have a list of questions, which she usually rips through, answering them quite easily. I warned her of my final question this week. I told her it was a very dumb question, to which she replied the classic phrase, “there are no dumb questions”, in her cute Indian accent. I believe she stood corrected.

We had been creating port videos, which involved port characters. Some of these videos are not suitable for the blog obviously. None the less, I needed to know if it was okay that I continue to draw on or around my port with a sharpie (or pen in general), as to avoid toxicity of whatever level.

I warned Dr. Amin again, that it may not be a stupid question, but rather a very idiotic one.  Once I had spewed it all out, she agreed and exclaimed, that it was indeed the “most idiotic question she had ever been asked”… I of course take pride in this.

The good news : YES!!, I can continue to draw on my skin as long as it does not get irritated and NO!!, I can not actually draw on the area of the port that sticks out (the bottle cap area-as I call it). Either way, a win-win. I can adjust, as I have so many other characters to create. It may be sad (to some), that this was my most important question of the week, but I asked a lot of questions last time, so…. yeah, this was a victory to me.

Anywho, after agreeing that I was dumb, Miss Kitty took the liberty of showing Dr. Amin and her assistant one of the port videos… they kind of laughed guiltily… and seemed  a little shocked. They were quite curious about the talking Pet app (my talking PORT-as we call it). It seemed strange because then they both immediately shuffled out of the room strangely, as if not to get any more of US on them… and they were gone… but oh well. Another week, another treatment, and hopefully soon… ANOTHER PORT VIDEO.

ADDED 3/12/15

Oh, I forgot to add that Chemo 3 was somewhat uneventful. The only highlight was Miss Kitty downloading an 11 minute clip from the internet with fart sounds to play under my blanket for NEW visitors. She prefaced their entrance with, “she’s really gassy today, just ignore it, she doesn’t like to talk about it”. The individual did ignore it until I moved the phone out from under me, thinking there’s no way they are falling for this after about 10 minutes… apparently, they were slightly appalled, but maintained their composure. Ha. There is video before the guests arrived, but I’m not sure it will be posted.

Miss Kitty downloaded that little gem while I was in the restroom. I guess it was a little embarrassing for her when the download started playing (quite loudly), in front of a couple of other patients. I walked back into the room where she was red faced and laughing. Needless to say, it was quite amusing for awhile by ourselves. It wasn’t very busy in my pod (chemo room) that day, thank God.

Perhaps I’ll tell you about Mr. Wonders next time… we’ve run into him the last two weeks. Nice guy, we really like his last name…

Cheers!

The Real Story Behind Week Number 1 of Chemo…the True and Unedited Version

Several people have mentioned that “gap” in the start of the blog and the first post (chemo #2)… asking where is the information about the first chemo treatment?  What happened during that one? Why was it not mentioned?

Well honestly, I’m not sure where to start…

Looking back, it seems like the “plan” was quite straight forward, but when the whole litter of Kittens (aka the MacDonald’s ) are involved… nothing is predictable… I should have known something significant was going to happen, something we shouldn’t “blog” about… but who can predict the unpredictable?  Not me.  Not Cancer Kitty.  Not Itty Bitty Kitty.  Not Big Titty Kitty.  Not Panther Dan.  Not P. Kitty.  And certainly not Little Pissy Kitty.

The Kittens were scheduled to come into town on a Wednesday.

It was a cold, dark night…. literally it was 8 freaking degrees Fahrenheit (for people in St. Louis, that is COLD) and it was dark, because it was damn near midnight when their twice delayed flight finally landed in St. Louis.

Catfish, or sometimes referred to later as Miss Kitty, (The Creator Of The Blog) and I were on the case. We killed time touring Ferguson and the areas surrounding the airport.  We picked up the two youngest kittens, who resembled the old guys on the muppets, telling their tales from their exciting day of travel… bobbing around in the back seats of the car, their silhouettes resembling those of Terrance and Phillip.

I remember some story about an unsuspecting gentleman by the name of “DeJarlo” and how deliriously they seemed to think everyone was hitting on them along the way from Canada to the US.  They were crazed… barely coming up for air.

Anywho, let’s speed up. We got them, we went back to the city, we got to my apartment. Catfish left, they made fluffy beds fit for a litter of kittens on my big couch.  We had a plan for the morning. Coffee, port placement at the hospital near my house (pretty simple surgical procedure), then off to the county to meet my liver specialist for the first time. It seemed like a great plan, we went to sleep.

THURSDAY:

This was the big day. Catfish picked us up early, around 8am.  We stopped for coffee (Park Avenue Coffee-FYI-good stuff), headed to the hospital (Barnes in the Central West End).  Everything seemed to be going so smoothly. Too smooth (like the good parts of my colon).

I went into surgery. I was supposed to fall asleep. I was talking and talking (very much like the kittens in the back seat), for what seemed like a really long time. Next thing I know, the procedure is over. The anesthetist claimed she had given me the same amount of drugs as the “last guy”! That’s always encouraging. Especially after telling the surgeon earlier that I had colon cancer, “the old man’s cancer”, when he was trying to confirm I had ovarian cancer… I guess it was written down wrong. I immediately joked with him that it was stereotypical of him to suggest that just because I was a girl I had ovarian cancer… he was a little startled… until I laughed.

Anyhow, let’s get moving again. They had chopped my chest wall open and inserted a little device to make administering poisons into my veins easier… my port (please say “port” in a really high pitched voice).  We packed up from there. Took some photos in the wheelchair. Maybe went to lunch. I don’t really remember, I think the anesthesia finally kicked in by this point!

Next stop, Dr. Hawkins office, the legendary liver specialist I had heard about (the Ron Burgandy of livers-he is a pretty big deal). We got signed in, everything seemed great. I was called back to the exam room.  Once we realized there was room for all of us in the exam area, Catfish went out to gather the two little kittens in the waiting area.   All the way back giving them to pep talk about “holding their shit together in the room” and “there’s no crying in cancer appointments!”  Megan (Pissy Kitty) was feeling especially strong as she confidently said, “We got this!”

Meg and Marni

The kittens even looked the part…little did we know they had us all fooled.

Catfish was manning the voice recorder during the appointment, so we didn’t miss anything and could review things later if necessary. The physicians assistant came in to ask some preliminary questions. She had me change into a gown. I of course forgot to wear underwear… a common mistake, at least I had pants on.

She asked some very general and simple questions… you know the ones… “Have I ever had surgery?”,  “Have I ever had a heart attack?”, “Have I ever broken a bone?” This went on for 9 minutes and 52 seconds (the benefit of having a voice recorder you know the exact time). Suddenly, Little Pissy Kitty stood up, claiming she needed to get some air. Of course she was sitting in the corner and basically had to climb between and over Catfish and then Itty Bitty Kitty. I realized she was not looking so good, as she used the wall to stabilize her wobbly, little legs while attempting to open the door out into the hallway.  I told Itty Bitty to go with her… just as Pissy swung the door open. Itty Bitty reached for her coat and purse (which was alien to me, as I do not carry a purse-ever).

Then it happened, Little Pissy Kitty raised both paws up now to the jam of the door and I knew she was going down… timber!  I yelled for Itty Bitty to get her, as I bounded off of the exam table, butt cheeks exposed as my cat-like reflexes caused my gown to flow gracefully behind. Itty Bitty was able to grab the sleeve of Little Pissy’s coat to help with the inevitable crash landing she was about to have onto the hallway floor.  She fell in slow motion, like a tall, thin, white oak (she was pale, I say)… do Oak trees where skinny jeans?

Itty Bitty had a death grip on the giant timber’s jacket which could not be stopped once in motion. The momentum of this tree was barely interrupted as the sleeve tightened, and Little Pissy’s head snapped sideways just as it caught banging and bouncing on the cement floor. The sound was sickening. I think we all gasped… but only one of us peed.

The Fainting Goat

By this time, I was at Pissy’s side. She had landed on her right side, banging just above her eyebrow, next to her temple. She stiffened, rolling onto her back involuntarily. Her back was almost arching. Her eyes and tongue flipping back and forth… she was seizing… like a scene from the Excorcist.

The physicians assistant barked the obvious (that she was having a seizure) and ordered her to be rolled back onto her side.  I supported Pissy’s head rolling her back onto her right side, exposing my backside for all of the office to see. Thank God I had this fancy gown on… oh wait… I shouldn’t have been lifting anything over five pounds for a week, since I had just had SURGERY!!! Have you seen Pissy Kitty’s head? It’s huge, way more than 5 pounds anyway! I had to hold and lift and roll this giant head. Her body almost followed on its own, like an obedient puppy.

Pissy Kitty came back to reality within a matter of seconds. She was alert and awake and extremely apologetic, as she chewed the gum that had only moments earlier been stuck in her hair. As she chewed the hairy gum she looked at each nurse and assistant telling them all she was sorry. Then she saw me, clearing her hair from her face. You could see the remorse and then embarrassment coming over her. She apologized to me… then she announced loudly to the whole office that she thought she had peed in her pants.

Sure as shit, there was a puddle beneath her dark denim, tight ankle jeans. Itty Bitty Kitty (Marni) had just pulled her jacket back from this area, realizing that in the excitement she tried to stuff her coat under Pissy’s legs.  Her jacket was soiled with urine… as soiled as Pissy Kitty’s pride.

A nurse interrupted our shock and laughter at the sight of the puddle, “How old are you?”

Little Pissy replied, ” I’m 33… but I’m potty trained.”

Well, that was the end of our adult behavior. We were laughing like hyenas, the three of us. The nurses all looked at us in horror. I turn to see Catfish who had instinctively already whipped out her cellphone… she had been videotaping us for awhile now.  With a cat like grin she said, “This is going to be great” (the video).  Keep in mind the voice recorder was also in play and recording the whole incident. I was in disbelief of it all… and kept making this face.

Jill

Is this real life?!

The nurses began to scramble around Pissy Kitty getting a blood pressure cuff, explaining to us how serious this was, while we all continued to laugh hysterically off and on. They were advising us to get Pissy Kitty into an ambulance, as they had called 911. “Ain’t nobody got time for that!!”  I mean, it was only a little “bump!”

Bump

Of course, we idiotically declined despite the massive hematoma on Little Pissy Kitty’s temple.

Pissy and Itty Bitty were ushered off to another room and later moved out to be examined by paramedics who arrived in an ambulance. Once again they declined the ride to the other side of the hospital to Emergency.

IMG_1218

Meanwhile Catfish, the physicians assistant and I went back to business. We met with Dr. Hawkins, who had a great sense of humor about it all… thank God. He went on to explain his plan of attack. We parted ways and met up with the little kittens in the waiting room.

They were both still laughing of course. Pissy seemed embarrassed, but humored by herself. We returned her wheelchair, stole a blanket for her to sit on, so she didn’t get her pissy pants all over Catfish’s car.

Megan

We had to make a new plan of attack. We headed back to the city. We would get Pissy cleaned up and changed, Catfish would let one of her 3,000 animals out to pee, Itty Bitty would get a new jacket and I would rest… after getting the pissy pants and jacket into the wash. Catfish came back and took the kittens AWAY, I mean to Urgent Care down the road from my place.  Unfortunately, as it turns out, if you have a seizure you have to go to a real emergency room. Off to St. Mary’s Hospital they went… there she was given a full exam and determined not to be pregnant.

Megan Bed

Because of all the excitement, my friend Compton had to pick up the third, and final kitten at the airport… Big Titty Kitty was about to come to town… what could be next?!

Lot’s of things… like coming back to my chemo room from the bathroom and finding Miss Kitty sprawled out on the floor, pretending to have fainted like Pissy Kitty, only with a medical mask!

Fainting Goat

Or the Kittens totally ignoring anything that might be happening with me during chemo and taking selfies of themselves!

Kittens

Or Lovett, falling for yet another one of Miss Kitty’s pranks and thinking she had to wear this attire to visit me in the chemo room… yes, that is a HOT blanket.  She was ready to pass out when we broke her the news that we were just kidding!  Luckily the nursing staff played along with everything.

Lovett

Well, until next time… Cancer Kitty out… I’ll be back after Chemo Friday this week. Cheers!

Jill Cheers

Check out the video link for the full story!

 

 

Round 2 of Chemo is in the Books

My parents arrived in town Wednesday, February 18th (staying until the 25th-one week) for the second chemo treatment which was Friday, February 20, 2015.

The treatment consisted of:

Flush??-20 min
Steroid-20min
Benedryl-syringe (takes 2 seconds)

Antibody (Avastin)-30 minutes

FOL-FOX:
FOL– Folinic acid (leucovorin)
F – Fluorouracil (5-FU)
OX – Oxaliplatin (Eloxatin)-2 hours

The 5-FU is administered via a take home pump over approximately 46 hour period. They give you a syringe full, called a “push” before they start the pump because they’ve found that’s more effective.

The treatment itself took about 4 hours this time. I was there for over 2.5 hours for the blood draw and oncology appointment ahead of time. I assume the appointments before treatment were a little longer due to volume of patients seen this day, as the first week was much quicker.

I was pretty tired during chemo due to the Benedryl. Wasn’t much for company this time. I struggled to stay awake. Next time I’ll definitely sleep rather than fight it to impress my guests, JK.

Walking out of the hospital, I think the temperature was approximately ABSOLUTE ZERO!!! Or likely in the single digits with the windchill. I was told I likely wouldn’t have the hand/foot neuropathy until down the road as the OX?? built up in my system. This was not the case. I couldn’t feel that it was actually cold, but my face (lips) and hands and feet were instantly tingling, then feeling the pins and needles. I asked my parents if it was super cold out, as I was quite shocked by what I was feeling. They simply said yes, as I race walked away from them to the car quickly.

Lucky for me I left my gloves in the freezing car for the last 6.5 hours. Yahoo!! By the time I got to the car I felt like I was getting electrocuted in the hands and fingers. It was pretty great. My “driver” warmed up some gloves for me quickly by blowing in them. Just to put them on was pretty painful. After a few minutes, the shocking resumed to pins and needles for awhile. I guess I learned my lesson.

I also had the neuropathy in my mouth and throat again (had this the first day of treatment). Same feeling, pins and needles on the tongue and throat. I just had to avoid drinking anything cold. By cold, I think anything below a warm room temperature was included. Kind of annoying.

Other than that, Friday was pretty easy. There is a little anxiety feeling I think due to the steroid, almost an irritability and speediness of the heart and thoughts. This can be controlled with Xanax pretty easily. I still felt fine Saturday all day. I attended my company holiday party that night. Avoided cold/free alcoholic drinks, sadly.

Sunday morning, I woke up pretty early. Went down to the basement and rode Kelley’s spin bike for about 20 minutes. I wondered if I was feeling alright, since it’s been down there awhile and I’d never ridden it before. I felt fine the rest of the day. Took an hour nap just after lunch. About 2:30pm, we (myself, Angela, Compton and my parents) headed out to the Barnes Home Care facility to have the pump removed from my port. Angela and Compton were taught by the nurse how to do this. It’s a pretty simple procedure. Consists of detaching the pump and then flushing the port, etc in a sterile manner. They were both very impressive. Angela was exceptional at the 30 second “hub scrub”. These little hub scrubbers are going to do great next time, I can just feel it. We capped off the day with some wings and beer (water for this elephant) back in the city.

Woke up today (Monday) feeling fine, yet again. Went to work. Felt a little tired around lunch time, remedied with a little coffee. Feeling better now.

Not much planned for the night. Dinner with the folks and friends, my mom made my favorite dessert. Tomorrow I think we’re going to the Blues hockey game. The Canadians will be happy to see the Canadiens play. Then they will be off to Canada the following morning to warmer temperatures hopefully!! It’s been warmer there this entire time, poor chaps.

Until next time.

Frequently ANSWERED Questions….

1) How did you know you had “the cancer” Jill and what type is it?

Well “insert your name”, I knew because my doctor just told me at the end of January. I underwent numerous scans/tests (ultra sound, CT’s, MRI, hemangioma scan, blood tests, etc.) and eventually a colonoscopy confirmed my dreaded diagnosis. The spots on my liver were detected at the beginning of December (2014). There were scans and tests performed in order to try to rule things out (benign tumors). When the scans and tests hinted that it could be metastasized tumors, more scans were performed looking to identify a primary tumor site (which happened to be in my Sigmoid colon-confirmed via colonoscopy). The actual diagnosis (I think) is malignant neoplasm (I believe an adenocarcinoma) of the sigmoid colon with metastasis to the liver. The fact that it has spread to the liver makes it Stage 4, however this is a very treatable/survivable stage 4 cancer, not like some of the others. So don’t freak.

2) What were your symptoms and did you feel any pain? Did your poop look different?

My poop came out looking like a rainbow. Just kidding. I didn’t really have a lot of symptoms or so it’s actually just very easy to pass symptoms off or ignore them. Supposedly younger people with this type of cancer do not feel much different physically. I had some discomfort in my stomach/abdomen area off and on for months. Didn’t think much of it. As for my stool… well… hmm… I had some blood (red in color-can be darker if near the stomach or beginning of digestive tract) in my stool over the summer. This was passed off by my doctor, as it is very common if individuals don’t consume enough fiber and could have an “irritation” (HEMI) near the end of your digestive tract. I think I had noticed a little blood each year randomly. Again, never thought twice about it. It would only last a couple of weeks at most. I did notice within the last year that the girth of my stools had changed slightly, just smaller. Not the “ribboning” as is classic with a colon obstruction. It’s good to make note of any consistent change I guess. I think I ignored a lot of symptoms that should have been obvious, had I taken my family history into account or even just been aware that this could be a possibility in future. Clearly something had been going on for a number of years in order for this condition to be as advanced as it is. I was told it could have been present for the last 8-10 years, possibly.

3) What kind of treatment are you undergoing?

I have started chemotherapy (with an antibody) and will hopefully be a candidate for surgery in future.

Chemo: FOLFOX:5FU
FOL: folonic acid (leucovorin)
F: fluorouracil (5FU) adrucil
OX: OXALIPLATIN (eloxatin)
antibody: AVASTIN

My treatments right now are every other Friday. They last about 5 hours. I am set to have 4 treatments over 2 months and then undergo a scan (PET or CAT?) to check and see how it is working. The goal is to get the cancer under control. First, to stop it from the possibility of spreading or creating new tumors and stop current tumors from growing. Next, we hope to see the current tumors in my liver start to shrink (small ones should hopefully disappear-via magic and smoke and mirrors of course). If they can get the tumors to shrink I could possibly have a couple of surgeries to remove most of my liver (don’t worry, it regenerates) and part of my colon.

4) How long will you undergo treatment?

There’s no real time frame on treatment, it will all depend on how the cancer responds to the treatment.  Everybody is different and every case is unique. There are other options if they are not achieving the desired result. I will know more after each two month treatment plan.

5) Will you get sick from your chemo or lose your beautiful hair?

Side effects from chemo are all different, based on the type of chemo and then also on the individual.  People can have no side effects or all of them, or somewhere in between. It all depends on how an individual metabolizes the drugs. It also can take time for the drugs to build up in your system, therefore side effects can be worse later in treatment. As for my sweet, sweet hair, I should be fine. It may thin a little. I don’t have much to begin with, but the type of chemo I’m on doesn’t usually cause patients to lose their hair (even though Compton REALLY wants to shave her head).

6) Can I buy you a drink?

Heck yeah! Non-alcoholic ONLY. I’m crying on the inside.  Not really. I’ve had to basically stop drinking completely (aside from a drink maybe once a week or so). My liver is working overtime, having to work harder than ever to filter it’s regular workload. The liver filters and breaks down foods, medications, pretty much anything that goes into the blood stream, I think. It is obviously easier not to add insult to it’s injury, as having to break down alcohol is not it’s priority right now.

Why doesn’t this blog have a name?

Well, because naming a blog is ridiculously hard…you try it…seriously, it sucks. So to show you how hard it really is we’re going to list of few of our failed attempts to find the perfect name for the Jill Mac Blog…

JM:  Cancer Road…Take me Home (with John Denver music in the background)

AC:  Dear Cancer

JM:  Puke a Mile in My Shoes

JM:  Canadianwithcancer

AC:  So Cancer Walks Into a Bar

JM:  If It’s Not Cancer It’s Crap!

AC:  We’re All About That Bass…No Cancer…I’m Bringing Chemo Back!

JM:  Oh-Cancer-Da (Canadian National Anthem)

AC:  Silver Linings Cancer Playbook

JM:  Port Break…Starring Keanu Reeves and Jill Mac

AC:  The Cancerfather…Starring the Mich Light Mafia

JM:  Cancer Act…Starring Whoopie and Jill Mac

AC:  Cancers on the Side…also Starring Whoopie and Jill Mac

JM:  Million Dollar Cancer…Starring Hiliary Swank and Jill Mac

AC:  I Rode Through Chemo on a Port with No Name

JM:  If My Port Could Talk

AC:  Billie Jean is Not My Cancer…It’s Just a Cell that Claims that I am the One

JM:  Good Morning Ladies and Gentlemen, This is Your Cancer Speaking

AC:  The Hill is Alive with the Sound of Cancer

JM:  Cancer Chief…Suck My Dick!

AC:  You Say Potato…I Say Cancer

JM:  Why Did the Cancer Cross the Road?

JM:  Cancer for $1,000 Alex!

AC:  The Good, the Bad, the Cancer

JM:  The Young and the Cancerless

AC:  The Days of My Cancer

JM:  Has Anybody Seen My Cancer?

AC:  Knock, Knock.  Who’s There?  I Have Cancer.

JM:  Cancer Made Fun

AC:  Cancer Isn’t Funny But This Blog Is

JM:  Cancer By Number

AC:  The History of Cancer…My Cancer Tree

JM:  Don’t Step in My Diarrhea…Verbal or Rectal

AC:  Liverwurst…I Mean Worst Liver

JM:  Senseofhumorrequired

AC:  Pandas With Cancer

Please feel free to send us some new ideas of your own!

Funny ones of course.

 

Humor

“Good humor is a tonic for mind and body. It is the best antidote for anxiety and depression. It is a business asset. It attracts and keeps friends. It lightens human burdens. It is the direct route to serenity and contentment.” ~ Grenville Kleiser