I Hate to Burst Your Bubble…

Chemo #12 is NOT in the books folks, that’s right, it was a no go because my white blood cell count was low today.  Let me be clear… not as low as my tolerance level for babies screaming on long flights or of people who pick their noses at stop lights…but low enough that they want to wait until Tuesday. Amazingly, The Captain’s blood alcohol level was higher than my white blood cell count this morning… well… maybe not that surprising.

Every time I turned around the Captain was sleeping (or slipping on banana peels). I guess she had a long night:

IMG_5619IMG_5621IMG_5645IMG_5647

She even fashioned a protective breathing mask into an eye mask, to ward off the evil light that seemed to make her hangover worse. Quite impressive.

As for the low WBC’s, I haven’t felt great this week so I may be fighting something off…who knows.  Do my tonsils look ok? image It really only hurts when I jump on trampolines in cowboy boots…ride llamas backwards at Grants Farm…or when laugh… like this… and sometimes laughing like this makes me get gum in my hair…which is very annoying.image A weekend reprieve isn’t such a bad thing…I’m “not so secretly” happy, actually because now I can frolick around freely all weekend like a red lipped bat-fish in an ocean reef…yes it’s a real thing. red-lipped-batfish Lovely lips don’t you think? It was a long appointment this morning regardless because we got stuck in a room waiting to be seen…which of course can get quite boring after your 1,000,456th doctor’s visit in 10 months…not that I’m counting. We tried playing games…like peek-a-boo.  I mean I’m not sure why kids like that game so much…I got bored after like 35 minutes and the Captain quit getting scared when I peeked out after 30 minutes. image I decided if I could only create a diversion in my room the doctor would surely come in quicker to check on me… loud popping noises perhaps?image Apparently the staff at the Siteman Center is used to hearing loud popping noises…I guess it is St. Louis after all they probably just thought it was gunfire or fireworks… needless to say they didn’t come to check on me any faster. We got bored with that game too after the 67th glove exploded… but then the great idea of filling one with the foam hand sanitizer came to mind!  Who knew how bad it burns in the eyes and how bad it tastes?

Here is a frame by frame recap:

IMG_5639

IMG_5638

IMG_5640

IMG_5643

IMG_5641

IMG_5636

IMG_5637 (1)

This is the first room we’ve been in that didn’t have an actual “eye wash station”… luckily the sink worked just fine. 

I mean, look at her jacket. The entire room was covered in spray from that stupid idea. What an idiot. The room has never been cleaner since we left…

Anyway, we’ll try again on Tuesday and hopefully that will be my last round of chemo for quite awhile… at least until after I recover from surgery. Anyone that can make it to our Halloween Party at the Top of the Met  on October 31st, here are the details or go to my Facebook page.

Halloween Invite  

 

She’s like the wind….

Nobody puts Baby in a coroner… Oops, I mean on a manual bike…

bikered

Here I am: bike

Thank you to Joe and Kathy Mohr, for providing the sweet wheels for the ride. Very thoughtful.

Pedal The Cause 2015 was a success! Our MacDonald/Sharpless team started and  crossed the finish line as a team  (it was nice to ride the same week as Brent’s birthday 9/21).  Thanks to all that supported and participated.  It was an amazing event and a beautiful day for supporting such a great cause.

I ran into my liver specialist there. He had ridden 50 miles like a champ. He informed me that he was quite happy with my scans from last week. I’ll have round 12 of chemo this coming Friday, followed by a four week break (necessary to rest and recover for surgery). After four weeks I’ll have another scan and surgery will likely be scheduled and performed maybe early November. Pretty exciting.

More to come….Cheers to all.

 

 

Everything is bigger in Texas, including my liver…

Good news!!!!

i received my scan results Monday. I was informed that there are no new tumors at this time (anywhere)… Which is always good to hear for obvious reasons… But also, good old Lefty Liver grew as well. As hoped, the left liver (or my Future Liver Remnant), has been growing. And growing quite well. Sometimes growth can be slow or just doesn’t take place if your liver isn’t very healthy. Well amazingly, this little liver of mine, really wants to shine.

i also pranced around the hospital, pretending I was a doctor

image

 

image

Apparently the amount of growth appears ( visually) to be enough to go forward with surgery to remove the right lobe completely. I’ll still come back and consult with my liver surgeon there, but it sounds like things are moving along as best they could be.

Im very lucky to have things progress as well as they have. I blame all of you. So thank you.

I have another consultation tomorrow with the colon specialist. Just to go over scans and options in the future. The facilities here in Houston are top notch. MDAnderson is quite the place, as is the entire medical campus.  I feel pretty lucky to have had the opportunity to come down here. I appreciate the support there and here during my stay. Thank you all. Everyday I eat fresh oysters from the gulf for you:

image

 

 

I also visited Galveston. I rode every ride and jumped off the pier twice. Jk. I also walked along the beach in the warm Gulf waters that have been threatening flesh eating bacteria thru June. Live on the edge. Sometimes by accident.

imageimage

One last thing, Nikki Christ’s niece (Emily Linneman), is in need of a miracle, please keep her in your thoughts and prayers.  I shared her GoFund me on my fb page if you’re interested in donating or even just wanting to read her story.  Thank you in advance.

Cheers fools!! I’ll be back Thursday afternoon.

 

Houston or bust….

Howdy ya’ll. I made it to Houston this morning. I’ll be gone for a week. My travel partner, Kim, will make sure I get to all of my appointments on time. I can’t believe that Angela is letting me out of her sight…

image

On that note, keep Angela’s family in your thoughts. Her dad took a bit of a spill off of a bulldozer the other day, she’s down in southern Illinois checking on our dear old Doyle. She may actually be acting as an interpreter for Doyle. Hopefully she hired and interpreter for herself too. An interpreter for the interpreter… It’s like a Seinfeld episode. For those of you who know how Doyle and Angela communicate, this is warranted. Mumblers. “What teacher?”

image image

Alright, back to me… So I have a scan and some blood work scheduled for tomorrow. This scan should show any healthy growth and results of the last procedure I had in July. That left lobe should be large and in charge. Following this scan I will have an appointment with the colon specialist. This appointment will likely be next week Monday or Tuesday. I won’t know until after tomorrow. I do have an appointment scheduled Monday morning with a liver specialist.  Also, this is just a second opinion. There are no plans to seek or change treatment, just getting another opinion and opening up options for other clinical trials if necessary in future. I also just didn’t want to work for a week because I’m lazy and I hear Houston is beautiful this time of year.

image

Ill update you all as I know things. Stay tuned.

 

 

This is 37… OxyContin, oxycodone, oxykitten..

I feel pretty darn good for having no working right lobe of liver.

image

Tuesdays procedure was slightly painful, I won’t lie… Yet.

They load you up with some feel good drugs (not enough) and then go on with the procedure. They fill some veins with some sauce (like caulking shut an opening), for you Home Depot lovers or weekend warriors. This does what we said earlier, causes a sort of heart attack to your one side of your liver, as you’re blocking off it’s blood supply.

I guess some people fall asleep during the procedure. I, of course, did not… Again…, like when I got my port placed. However the port placement was not painful. This time they go about the procedure and administer pain meds based on your discomfort. .. Oh and they remind you to lay still, as you have a needle or two running through a major blood supply, under your ribs. Ha.  Anywho, some people do not experience pain. I was lucky to have a little. About 30-40 min later I was good to go, they get it under control pretty quickly. Then I felt fine for the next few days, taking very few (if any) pain meds..

There were a few false alarms in the hospital with nausea, but that subsided really quickly. It was brought on by small amounts of food or drink, combined with any quick movements. If you laid still, which is impossible for me, then you were fine.

Ive been tired a lot and started experiencing some cramping pains over the weekend. I only include this because NOWHERE on the internet does it say that people would experience pain. Pass it on, it’s normal. It comes and goes and is tolerable, like my friends. I had been expecting flu-like symptoms only (fatigue, fever, aching, a little nausea). I know they say not to believe everything you read on the internet, but there was really no info on this. So here it is now…

Anywho, just a short update. There are slight fevers randomly once a day. Pain here and there. The diaphragm is involved and areas are inflamed and irritated in there, so deep breaths, laughing and other full lung inflating requirements are not restricted, but avoided. 😉 I am trying to avoid addiction to pain meds also, see the following:

https://m.youtube.com/watch?v=o6yVRIF6jl8

(Click on link above)

I should be returning to work tomorrow (Tuesday 25th). I’ll have chemo this Friday, coming up. I’m not due for any scans until mid to late September. I go to MDA (Houston) September 18th I think. I’ll stay there about a week to get a second opinion and touch base with some different doctors. Nothing major will happen there. Just trying to get some other options in place, if ever necessary, way down the road.  My next liver surgery could happen in as soon as two months. They would be removing the entire right lobe. That will all be dependent on how things are healing and growing from this embolization. I’ll know more in about a month hopefully. Stay tuned.

angela was kind enough to let me wear her hat in the hospital:

image

Thanks for all of your thoughts and prayers, as always.

J

 

 

You Say Tomato…I Say Portal Embolization!

Well….I always knew this day would come…but I naturally assumed it would be caused from drinking copious amounts of alcohol…today is the day I officially killed half of my liver!  Definitely an occasion to dress up for!

image

imageContrary to popular belief…killing a lobe of your liver with a portal embolization is a lot faster than drinking with the Gayborhood in the Tiki Bar everyday of your life.

The 2 hour surgery was performed by a interventional radiologist and consisted of inserting a needle into the right lobe of  my liver…something I completely recommend that everyone try on their enemies at least one in their lifetime…it was not on my bucket list.

A catheter was inserted into the needle  that contained a hardening type substance they put into the portal vein. This substance hardens and blocks the blood flow  to the right side…causing what the doctor described as a “heart attack” in the right lobe…which sends extra nutrients to the left side to make it grow…grow lefty!

It’s true folks…my liver suffered a heart attack today! Like…who can even say that?!  I must be special…so much so I have received the following awards by Barnes Jewish Hospital…

1.  Patient of the Year – January 2015 to Present

2.  High Pain Toleranxe (high pain in the ass also)

3.  Most Liver Lesions (currently at Barnes)

4.  Most Organs Resected/Removed in One Surgery – May 19, 2015

5.  Most Likely to Cause Nauseau and Vomiting in Nurses – 1978 to Present

6.  Honorable Mention – Most Accurate with Bed Pans – 2015

7.  Most Likely to Confuse Colastamy Bag with a Chocalate Pudding Snack Pack

image

image

My parents will be so proud! Panther Dan and P Kitty you raised a real winner!

I’ll be in the hospital overnight and have been given this advice for my recovery in the week to come. image

Going slow takes time…so to ensure I monitor myself I stole this lovely clock from the 14th floor…rolling like Flava Flav!

image

Assuming all goes as planned, my next surgery will be in 6-8 weeks.  It will be a big one…to remove the whole tumor filled right side of my liver that we murdered today.  As Dr. Hawkins says…tumors can not hurt you if they’re in a bucket on the floor!

He’s a very no nonsense doctor…you will be happy to know that he writes children’s books too! If anyone is interested…one is called “Don’t Cry You Sissy!” and the other one is “There’s No Excuse to Be #2 – You’re the First Loser!”

His own autobiography, “How Dodge Ball Changed My Career Path – Surgeons Rule” should be out any day now.  I hope he mentions me in the acknowledgment section.

Anyway…he motivates in special ways no other doctor has….he treats my liver like a punching bag and I keep coming back for more!

image

Cheers! Thanks for all the love and support!

 

Liver… Don’t fail me now…

Can I have your attention please….

Will the real blog editor please stand up?

So… you can pretty much SCRATCH everything you read the other day… regarding Houston, Bells Palsy, etc. There is a new plan in place as of Monday this week.

Houston… has been pushed off until September (just delayed a month). I’ll still be going down there. Boots, belt buckle and bolo are packed. Giddy up!!

Cowboy

Next week I will go under a very tiny knife… and have the portal embolization procedure performed on Tuesday (August 18th). Die shitty right side, grow little, healthy left side… ahhh… it’s very exciting. I’ve learned it only takes about a week for the left liver to grow to the size it’s going to need to be in order to take over all liver function. Over the course of the next 6-8 weeks, the left side will learn how to perform all liver functions to support the body. This little liver of mine… I’m going to let it shine…

p20

This girl above had the same procedure a few years ago and she’s doing just fine. Her left and right liver grew a little too much, but now she can drink more Jack Daniels than EVER. Lucky for her.

It’s a pretty amazing process when you think of it. My liver has been through the ringer already, so this should be like child’s play. I’ll likely just be off work for yet another week, with flu-like symptoms and then back at it the following week. Showing off my mad scientific genius skills at work.

Big shout out to Catfish and her hairstylist Conan, for everything she does keeping your all entertained and informed:

IMG_4599

Here’s to another successful procedure next week. Stay tuned…

Oh and I promise to try to get some port videos out… Angela has been slacking on these… well I have too… but I am sooooo sick, I should not have to assume responsibility…

 

 

Houston…We Have Bells Palsy!

So… a lot has gone on this month….especially in the last two weeks. So much to say, so little time…. Where to start?

First, I have a new ailment….apparently there is a little known fact that chemo causes  Bells Palsy! Who knew?

image

While it’s not permanent….Bells Palsy does make it difficult for me to do some of the things I love the most…like playing The Rose on the harmonica, whistling Dixieland, and humming the Jaws theme while chasing people that jog by my house….I can’t wait for my half frown to turn upside down again.

I’ve been sneaking around a lot lately… trying to get some answers from my doctors regarding certain things and peeking in as many windows as possible. At times it’s like pulling teeth. I have decided to get a second opinion as a backup  plan for the future, and to make sure all the treatment I’m getting is the best path.

I think my doctors are great but at times I wonder why they are trying to turn me into a mummy!  I mean seriously I’m not contagious people.

image

Oh Captain my Captain and I will run off together to Houston, Texas to  one of the finest cancer centers in the country…MD Anderson. I’ll see a doctor that specializes in my very special kind of cancer…Canadian cancer is the best…it tastes like maple syrup and typically the tumors are shaped like a beaver.

image

I hope to gain some more knowledge of what’s going on and start a beautiful new relationship down there…no not with an armadillo a doctor…just in case anything unexpected were to come up and treatment was not available in St. Louis.  I also love doctors that wear cowboy hats, chaps, and spurs and Texas was the only state that assured this.

As of now, things are going really great here with treatments, etc.  I’m still in the honeymoon stage with chemo. Loving it and just can’t get enough. I love getting off on every other Friday. Ahhh. I guess things are going as scheduled originally. I’ll continue with chemo here….I just finished round #9 of chemo…lucky number 9!  As you can see my organs look great!

image

I’m supposed to be getting scheduled in the near future for the portal embolization. For those of you with memories like me, that is where they block off a blood supply to one side (my right side) of the liver to promote growth in the healthy side of my liver. Then in 6-8 weeks from that procedure they can hopefully remove the entire right side of my liver which is hoarding tumors like old ladies hoard cats. Then I’ll hopefully be free of the old ball and chain..,cancer that is.

Thanks for all the support! Remember.,,if you see someone creeping around that looks like this….call the police.

image

 

 

Round 8 with a cherry on top…

trim.3BAD6EDB-E595-4E52-BF3A-A8CB1EED8DCD

Yo. It’s that time again. Round 8. Crikey!

Round 7 proved to be less than heavenly. Which in some cases…is actually a good thing! I prefer my feet on the ground…wings are highly overrated because they are hard to keep clean (as evidenced by all those poor birds in the Gulf after the BP oil spill) and they make any “sitting event” (like a Cards game) very uncomfortable. I know this first hand because I was once employed as a team mascot for the Toronto Blue Jays…that ended very  badly after I beaked some hecklers….anyway back to chemo.

All went well though, I survived. Hopefully as the chemo builds back up in my system my super powers will too.

Cold sensitivity was not at it’s peak, but I assume it will rear it’s frigid head again this week. My brain power is at about a negative two. I guess chemo brain is real, contrary to the popular opinion of donkeys in Western Europe. I now carry an abacus for basic counting skills like making change at the cigar shop or when buying coconuts at the farmers’ market.  They need to make them smaller because they are hard to carry…I may invent a pocket abacus!

I plan on rolling into my treatment with my iPad and an Odoul’s. I need to test the nursing staff. I had a private room last week…they are trying to separate me from the general population at the Siteman Center! I mean who knew there was solitary confinement for cancer patients?! They can’t hide me forever…I will make my way back into general population.

Mr. Wonders should be there this week. I finally heard back from him. He had gone missing for awhile again…perhaps he too was placed in the “hole” for bad behavior.

I met with my colon specialist Monday. I think he was impressed with my abilities to push in the stool. He made mention of some issues…mental only though, so not to worry.

Hmm…what else?  I’ve been working still…part-time ish because I’ve been really tired this past round. Fatigue is also real…not the Army kind.

I had the opportunity to join Teri Griege last night in presenting Nikki Christ’s niece, Emily Linneman, the Powered by Hope medal (or the Hope Diamond, as I like to call it). That was a pretty amazing experience to be a part of. Of course Teri immediately put us to work in her sweat shop of Hope. Her lovely assistant, Joy, was just a dream to do business with. Oh, and of course camera Dan.

It’s was pretty fantastic to see the family and all of their supporters in person. You could really feel the love in the room…I made a point to touch as many people as I could to feel more love but I was quickly labeled as creepy and asked to leave.

Which brings me to my next point… I just wanted to thank everyone for their continued prayers and support. Through words of encouragement or just keeping me in their thoughts, it absolutely means the world to me to know I have everyone behind me. I wanted to thank those of you who have taken the time to read through my Pedal the Cause page and also thank anyone who has donated. I think raising money is a big deal, but raising awareness is also key.

So thank you, from the bottom of my liver!

 

 

Chemo Makes Jill Angerer!!

I’m glad to announce that chemo #7 is in the books with no issues!  However, chemo really does make Jill angerer…I mean she seriously looks like the German goalie Nadine Angerer right?!

image

Of course, they are both angry women…but for different reasons.  Angerer is mad because they blew the number 1 spot and lost to the USA women in the World Cup (insert loud cheers)…Jill is angry because Apple Inc. just sent her a letter saying that she did NOT get hired as their new technical support manager for the Cloud.  I mean…I have to admit, I was a little surprised by this shun from Apple after Jill offered me this great technical advice just today.

IMG_3784

Now that my i-Phone is in the cloud I feel much more secure…thanks Jill you’re the best!

Seriously though, chemo is nothing to joke about! The mere thought of it brings out many emotions in Jill…pain…dread….fear…

imageimage

Oh wait…that was just more gas…sorry guys.

Everyone has asked how Jill is handling everything so well and with such a positive attitude.  We thought we really owed it to everyone to share her secret to happiness.

So basically, there are 3 main ways that she is keeping it together and maintaining such a fun and upbeat attitude through this challenge.
image#1…Yep you guessed it… pills…lots and lots of pills.  You got ’em she’ll take ’em folks! Anything from plant vitamins to horse tranquilizers! She’s like a walking Pez dispenser except pills go in…not out.  It’s seriously like watching Pac Man…she has pills hidden all over her house and she just walks around scooping them up in her giant mouth and eating them as if they were not even solid objects…like they’re air.  It’s weird…but whatever it takes right?!

#2…estrogen patches!!  After her hysterectomy things got a little dicey.  One night in the Tiki Bar she announced that she was “homicidally depressed” and went to get a knife from the kitchen…you know the knife…that giant one that Michael used in all of those Halloween movies…well…things got real…real fast!  I mean is there even such a thing as “homicidally depressed”?!  She said she was grouchy and just wanted to kill everyone else…well we took that to heart and have put 3 estrogen patches on her this week alone!!  She’s not aware of that fact so if you see her please don’t mention the “extra” patches on her back…it makes our lives a lot easier…and she’s real happy!

Last but certainly not least…she went to a natural healing doctor…Dr. Harrie Bush…who told her the key to positive energy and healing was drinking your own warm urine….gross I agree…but desperate times call for desperate measures folks.

image

Not everyday is sunshine and butterflies though.  Yesterday was especially challenging if you haven’t heard.  There was a giant ball of stitches in her incision that was causing irritation…I mean it when I say giant…it must have been like walking around with a human-centipede trying to crawl out of her stomach.

Centipede

They had to cut through her fatty layer to get it out…thankfully it was her stomach and not her butt cheek…that would have taken a chain saw.  Now she has to pack a giant hole in her stomach and there’s a piece of gauze sticking out so she looks like one of those things you pull numbers out of at the deli in Schnucks!  Number

image

I keep pulling it out and acting like it’s the winning ticket in Willy Wonka and the Chocolate Factory…she’s getting annoyed…at least I think so…number 138!!!  She really likes adding the packing…it makes her imageThanks for all the support!  Keep sending the prayers and positive vibes Jill’s way please! I think there has been a transition from panda to sloth. Watch for old Two Toes to continue to make progress… Slowly, but surely. Your support in any way is clearly making an impact on her improvements. Thank you again.