The Captain's Log

As usual this captain’s work is never done. The crew remains active as always. We have had family weekend, hockey and football, spirit week at school and homecoming is upon us! I also got to celebrate a birthday and as one crew member blurted out ….”Hey it’s …cake, candles and chemo,” I am reminded that her sense of humor is a captain in the making! (You know the whole apple tree thing…might be legit. Look out…)

On the hospital front we have started round 2. As part of the fun on day 1 of a cycle I get to see 3 different departments. As is the tradition with each department the need for my mental acuity to be tested continues. (As an added bonus this time they all wished me a happy birthday when I recited the name, age and Birthday routine) In the interest of making what I now refer to as “my long day” even more fun I get to check in, at the same place, 3 times. So, never being one to pass up an opportunity, I decided it was time to be memorable. My first check in was not super eventful, I did my best to be an honorable captain and engage the employee in conversation. We discussed her dog, kids and choice of breakfast…once again proving that I am still mentally capable. So when my second “check in” (with the same dog loving, breakfast eating, kid having employee) came about I was sure that I could offer up my bar code and have a laugh over her “everything bagel with extra cream cheese” but alas, she appeared to not recognize me. So at this point I was unsure if I had the conversation with her or if they were just testing my mental acuity once again. Determined to make the last check in the best yet…3rd check in goes like this:

Employee: Next

Me: Guess who’s back?

Employee: (blank stare)

Me: Back again..

Employee (still staring, apparently waiting for me to elaborate)

Me: Shady’s back? Tell your friends… (now employing my best dance moves along with my best singing voice) Guess who’s back, guess who’s back

Guess who’s back, guess who’s back

Guess who’s back, guess who’s back

Guess who’s back(Na-na-na, na, na, na, na, na, na)

(Na-na-na, na, na, na, na)

Employee: ummm, ok name and birthdate?

Me: so not a slim shady fan? Noted…. (Once again if you did not sing that… just why?)

I am unsure if it was my moves, singing or just doing her job, but I am sure I will be remembered for my next visit! Still making friends everywhere I go….

To continue the adventure, the hospital purchased heated recliners for the treatment rooms…what a fantastic idea you would think? Well I guess it depends on who you get to shop for said chairs. Based on my experience I am convinced the hospital put out an ad that read like this:

“In search of the perfect recliner! Recliner must recline to zero gravity at the speed of an indy car driver in their last lap! If you can’t fling the patient’s feet over their head then you are not the chair for us! Bonus points if you have an eject feature that while simultaneously removing you from the chair it still keeps you four feet off the ground, allowing for a perfect opportunity to earn even more extra points by sticking the landing. Lastly, if you lock in place at any level other than upside down, you are for sissys…we don’t need a sissy chair. So if you are the equivalent to a ride on an overnight carnival roller coaster then apply here!” I am a testament that they found their chairs…and of course I stuck the landing.

So as always please send prayers, and 3 ozs Lemonade ,1oz Gin and 1 oz Brandy …also known as the rollercoaster…because if you want to test the recliner you might need one of these…oh and a glass with a lid.

In this weeks events we celebrated a 19th birthday and that crew member even took time out from living his best life too join the celebration! In the ultimate sibling move the other crew member, after working all day even made a birthday cake…so this captain’s heart is full.

On the hospital front, today completes cycle 1. In the Tour de France, there are 21 legs of the journey…Since I will not be signing up for 21, we will follow this journey in weeks, which is 24 (because as always this captain is an overachiever) SO cycle 1 is is the first 3 or so weeks and if this were the Tour de France you’d know that these legs are for the sprinters…so I am over here sprinting….uphill, both ways, in the snow….(ok it’s Missouri so no snow yet, but give it a few hours and you never know…welcome to the Show Me State)

In other news, ralph continues to go where no man has gone before…how so you ask? So glad to tell you! So an unintended consequence of opting for the “comfortable and ALSEEP” procedure to install the port (stupid ralph….no he also does not get a capital letter in his name)is that you miss the convos that happen during the procedure. So, while the following account is not factual, I assure you there is no other option. You see ralph continues to confound hospital staff and he refuses to let go of the surgical glue. They TELL you it will “come off on it’s own” do not rub or pull, so being the good captain that I am I follow the rules. Turns out that glue, when left on can cause a reaction on skin (Cue the itching like I took a jog through a poison ivy patch in my birthday suit) So, when looking at ralph during my last visit it was determined that the amount of glue used would likely have been what was used to waterproof the boat in the flex seal commercial. So I have determined in an effort to go above and beyond the hospital went the extra mile during my recent port placement. I am positive the convo during my procedure went down like this:

Surgeon: ready for the glue

Nurse: well we have this half used tube, want it?

Surgeon: Sure…and grab the full one too, just in case. Can’t have too much glue!

Nurse: Great idea and that way if she wanted to be drenched with a firehose to the chest she totally could, because nothing is getting past this glue!

Surgeon: Great work team!

So, if you have an extra fire hose laying around I’m game to test it out! Otherwise, I will keep trying to remove said glue without losing layers of skin.

Lastly, happy to report that we are no longer in the gen pop lobby to continue my cold capping. (I’m positive the security guard is relived that he will no longer get called about the homeless capping lady) We have found a new area to finish capping in. While this area is secluded it is still an open area. So we continue to entertain! My puzzle skills have hit a new all time high… this week not only did I fail to fit the pieces together, I also took on the task of “hiding” puzzle pieces.. apparently I make it harder when I drop the pieces on the floor and forget that I did. So my crew, never missing a beat, has added hide and seek puzzles to our list of accomplishments! I think we are all looking forward to the week off next week. During my time off I’ll try to find a way to continue to up my puzzle game for our next outing.

So as always send lots of prayers, maybe for my puzzle skills? And a shot raspberry liqueur and 1/2 a can of Red Bull… also know as a “super glue”, because apparently this is my latest accessory! !

Ps… I included my “repping for Mizzou” pic and the age verify on the puzzles I’m attempting since I know you were concerned that I might be starting with the advanced puzzling … rest assured that they are right in line with my mental acuity on chemo day!

This week starts the second round in cycle 1 (of 6) for this captain. It seems that alls well on the Homefront. Unless you count a broken ice maker and no AC, because yes where would the challenge be if we did not have some mechanical issues here and there. (I draw your attention to previous “fun” example: last year pool water feature addition) So, yep life as normal.

Last week the crew took the show on the road at the new hospital location for day 1 round 1. The same cast of characters with the same admission ticket appears to work here too. Good thing I have cracked the code for admission and clearly have the passcode. Upon occasion this sneaky bunch throws in my middle name and gives me my birthdate to confirm…pretty sneaky sis….rest assured I have yet to be turned away at the gates as this captain seems to have the answers.

As with any expedition, this one did not lack for adventure (or entertainment?). I, along with my crew (Sherpas some might say) showed up on time and ready go. Equipped with 2 rolling coolers, knee pads, long sleeved shirts, blankets, frozen socks, frozen gloves, lemon drops, popsicles, hair nets, maxi pad (yep for the forehead) ear covers, compression socks and a partridge in a pear tree. (Ok not the last one but when I say sherpa I am talking about the Mount Everest level) The first stop (after producing my admission code) is a quick port blood draw (no that’s not a mixed drink to my dismay…seriously and they did not see the humor in that ask. Turns out they offer “counseling” for these types of things). Once admitted I was escorted back to make sure I was healthy enough to poison (yep, bloodwork has to be good to get chemo) and lucky me had the tech who had her first day …TODAY. One look at my newly installed port sent her into a whirlwind. Apparently no one mentioned a newly SURGICALLY installed medical device could appear red. SOOOOO, long story short after she literally ran from the room, got help and took pics we were off to the races. (Pro tip 1- getting the patients mind off a needle stick 101 apparently is talk about random things to distract, well your dishes in the dishwasher aren’t what I want to discuss..apparently hers have lemons on them!)

So, once lemon lady got the labs turned in we are escorted back to an infusion room… where the fun really begins. The first treatment is 3 drugs so this is the “long day” all in with cold capping it’s an 8 hour day. To add one more extra element of fun (I mean I did not ask for the backstage pass but hey some people are just lucky!) we got to meet with the educator! This lovely lady (she was actually very nice) has the admirable job of LITERALLY reading what I believe is the medication insert for each chemo drug. (Not sure who she made mad to get this job but pro tip 2- there are worse jobs than scrubbing toilets so be nice out there) Among the SUPER fun facts I learned that there is a lot of concern for my daily activities, while I will not bore you with all the details (I might have slept a little here, so I couldn’t anyway) I will just let you know that I will no longer be clipping my nails or shaving with a rusty razor. (Pro tip 3- It’s never a good idea to use a rusty razor, so if that was a question for you consider it answered)

Once the infusion is complete, this captain had the continued fun of wearing the cold cap (that is a misnomer by the way, it is actually a freeze your arse off cap…) for an additional 4.5 hours. Since the hospital had a whooping 300 patients getting infusions daily, we were asked to vacate the room. Undaunted by the task at hand the crew quickly relocated the circus to the lobby. The lobby is kind of fun area, they have drinks (no not that kind), couches and puzzles to keep you entertained! At this hour of the night (thanks for the late start lemon lady and educator) we were the only souls remaining. Through the course of the evening, the crew (while changing the caps every 25 mins) ordered food, entertained and attempted puzzles. This maybe where I wish they had cameras…as the captain I now have 3 chemo drugs, a 10lb ice cap on and several meds to “relax” me on board and I have been told that while I am pure entertainment, my puzzle skills are lacking. So after several attempts to fit the round peg in the square hole, I apparently decided to just take a nap….one a 2 person loveseat in the lobby…

So there was no surprise when at 9 pm the security guard arrives. (After what I am sure were serval calls about the homeless lady in the weird hat trying to do puzzles in the lobby) I can only imagine the thoughts that he must have had as he witnessed 2 grown men, a donut puzzle, 2 rolling coolers and a passed out lady wearing what had to be a conspiracy theory style hat…. Needless to say the crew handled it beautifully (surprisingly I was not encouraged to help explain the situation) and want the great news? We now have space to cap in for the next round! Guess homeless crazy lady in the lobby won’t make their next ad…go figure!

So as always send prayers for Ralph (yes he’s still here), the lemon lady and educator, the poor security guard and of course my crew…and maybe a few that this chemo does it’s job! Also please send 1.5 oz spiced rum, 3 oz mango juice, and a Splash of club soda…also know as The Big House cocktail…because I’m pretty certain that poor security guard was ready to lock us up…or commit me, but whatever!

Pics attached of the “pack”, the sherpa crew, the amazing freeze your arse off cap and of course the infusion pole…which yes I proceeded to dance with (because they told me that was not what it what for…always proving them wrong) There is no glamour or filters that can make this look good so whatever….I still think I could rock a hair net (if you aren’t singing adam Sandler’s lunch lady land what it wrong with you?)

Right now it feels like this captains world is moving at warp speed. This crew has had some adventures! The past week has given us a fundraiser golf tournament, a JUNIOR in high school (who no longer needs me to drive her!) and and FRESHMAN in college (MIZ..)

In addition to this fun, we brought back a familiar face’s relative. You might remember my port Richard from previous logs, he left in May and now I have what has to be his twin, who I will now call Ralph. Ralph and I do not get along, and I chose his name because he makes me want to Ralph. But, as a much more uplifting member of my crew reminded me, Ralph is helping me kick cancers a$$ once again, so maybe think of him as “Wreck it Ralph” (If you aren’t a Disney fan are we friends??) So, if you prefer that explanation there it is, me I’ll just keep saying Ralph with as much disgust as I can manage.

In true captain’s style, port placement was not the adventure I imagined. You know when they say port I think sun, fun and cruise ships. This was defiantly not that. To begin with this time they wanted to try “awake and comfortable” again, we all know that is not as advertised. So after some shrewd negotiations I was able to secure better sedation (more on that in a minute). The procedure went well and when I awoke I swear they had severed my arm…so as part of the package they swiftly offered me “relief” in the form of TYLENOL. (I really think this hospital gets a kick back for Tylenol.) I was reminded it was “extra strength” so yeah, I drug my arm home behind me once again.

I have learned that this hospital is second to none on patient notes. Have you ever read the notes they keep in your chart? Well, I firmly believe they have a court style recorder hidden in the closet. When I went in to check my appointment time, I discovered the gem that is labeled “after visit notes”! Turns out when I was discussing my port (ralph) in my mind, I was “politely asking” for sedation, the words that fell out of my mouth where more along the line of “Hell no, knock me out” (per my chart) So pro tip? Learn to mutter more under your breath or find that court recorder they hide in the closet. My poor permanent record…..

Also part of this journey is many new products that I get to “try”. Today’s new product? Aluminum Free Odorant…(Yes I know I left the “DE” off) There are several! Allow me to offer a quick review on what I have tried:

Secret – smells like poo and roses, so when you sweat there is a hint of roses among the sweat.. oh a ltlke baby powder just to “freshen it up… not

Salt Air- the roll on you never knew you wanted and still don’t. Lots of “salty” and you do not want that air

Native – For the days you want to smell like you are a “native” to the trash dump

Arm and Hammer essentials – smells exactly like an arm and hammer should, if it worked in 110 degree heat for 12 plus hours

Lume- Jury still out on this one, because there are so many scents, apparently you have to “find yours” …yeah well I just want one that does not smell like sweat socks and Fritos

So if you’d prefer future hugs to be with my arms at my sides or even from a distance (not air hugs because I’d raise my arms to do that) I will completely understand.

As always, send lots and lots of prayers and

1.5 oz Spiced Rum (for warmth and depth), 0.75 oz Ginger Liqueur (for a spicy kick), 0.5 oz Fresh Lemon Juice (to balance the sweetness), 2 Dashes Angostura Bitters (for complexity)

And Ginger Beer to top off…also known as a “Spicy Zing” which maybe my new nickname if I cannot figure out deodorant.

Stay tuned for a second captains log this week detailing today’s adventure, 1 down 17 to go… and yes it was a typical day in the life of the captain, I swear I’m on candid camera.

So a captains work is never done, so between getting ready for 1 crew member to live his best college life and the other starting Junior year, I decided to take on another challenge.

Last week, this captain had the unique opportunity to have a liver biopsy. I can report back, that was even less fun than previously anticipated.

So if you re considering this as an activity in the future please read my review:

This adventure begins with the same pomp and circumstance as your traditional hospital visit. You get to relive your days of lore by regaling the staff with fun facts like your name and date of birth. Since this is a part of each and every tour offered on this journey I’ll skip the recap, but rest assured I do know my birthday.

This tour provides several opportunities for enlightenment along with all the thrills of getting a root canal without novocaine! The first opportunity comes when you are wheeled into the procedure room (after your thrilling gurney ride on the general population mini elevator…complete with the game of how many people can we fit!?) Then they get the instruments prepped. You will be joined by an excellent cast of characters, for example a nurse, an ultrasound tech, a doctor and finally a super fun resident! The first opportunity arises quickly so be ready! They can and will show you the needle…so I advise make a choice before entering, (Pro Tip # 1 the only answer is “no thank you”) Failure to respond in a timely manner (2.5 seconds)will result in an assumed affirmative, and now you have seen the the needle (I am pretty sure Seattle is missing a landmark right now)

Just when you think to yourself “How could this be even more fun?” You realize the added perk of this being a “comfortable but awake procedure”! (I think someone needs to provide a dictionary to these folks, their definition of comfortable and mine are quite different) The perk? Well, hold on to your hat, because you get to be an observer to the “time out”. Let me take this opportunity to enlighten you on what a time out is. During a “time out” they will discuss the procedure in GREAT detail to confirm they are all on the same page. (Pro Tip #2 you do not get to decide what page they are on…I would have picked a whole different book) So buckle up here…all the things you never wanted to know about this procedure you now do….BUT the fun does not end there! Allow me to tell the BEST part. The actual time out is a conversation:

This convo happens in a huddle, right next to you, but you have apparently become invisible (and no I did not wear my camo, I opted for the highly stylish tour provided blue flower granny gown)

Surgeon: (to the resident) what will be your approach

Resident: I think right under the ribs, I can visualize it and less painful

Surgeon: Well, I agree with the less painful but it is less vascular BETWEEN the ribs

Resident: Well, yes, but…

Surgeon: (to the nurse) give her a second dose of Versed (yes, this will at least make you loopy) Let’s go.

Surgeon: (to me) are you comfortable?

Me : Most definitely not…

Surgeon: Let’s begin

Immediately following my up close and personal visit with the Seattle space needle, they roll you back to recovery. Where you will spend the reminder of your 2 hours on your right side. When you remind the staff that this was an “awake and comfortable” type procedure, and you are definitely 1 out of 2, they will quickly offer you relief. In the form of TYLENOL. (Pro tip #3 Tylenol will not clear out the pain of being shanked in your side like you were in the prison yard)

So in summary, this tour is not one I can recommend. While the staff are amazing (seriously I make fun of them they were all amazing) the facility is up and coming (due to renovations of the 1932 building, I will reserve judgement) the actual tour will not be one that you will want to revisit. (If you do I’d highly encourage you to take tour number 2, which includes a straightjacket, group meetings and maybe if you are good a sing along in the common room)

Now for the lemons….The biopsy did show the cancer is back. So to continue my comeback tour I will get to undergo 6 cycles (24 weeks) of chemo followed by surgery. I guess the good news is chuck will not be making a comeback! However the cold caps and “Richard” (my stupid port) will. I will keep you posted as I have more info, for now the plan is to start on 8/19.

As always send prayers (lots and lots of them) some lemonade, whiskey and triple sec…which when combined makes a lynchburg lemonade…because when life hands you lemons you add alcohol.

A captains work is never done and these past months are evidence of that. In quick succession we’ve had port removal (see ya Richard!), graduation, Drivers license, high school academic honors, trips to Florida and concerts at red rocks…

As part of ensuring the captain of this crew is fit for duty ongoing tests continue (also because I’m pretty sure those hospital people miss me and without them how would I remember my own birthday?) So 6 month CT scan it is.

If you are a follower of the captains log, you must know by now that I will always keep the medical field busy, so keeping with the “let’s not take the easy route” my scans went ahead put in a request for further testing in the form of an MRI (when is one test ever good enough for me?) long story short the CT showed spots on the liver, so not one to back down from a challenge I signed up for another arm stick and MRI (just in case you see me out I’m not yet an addict despite my arm appearance) The MRI scan is in a small enclosed space, further testing my ability to function in tight quarters. Pro tip: listen to a good song before you go in because it gets stuck in your head… also pro tip? Baby shark is not it.

Keeping with the “let’s not go easy” theme, the MRI produced similar results, so to further my pursuit of my new Halloween costume (I’m thinking pin cushion?) I will be enjoying a liver biopsy in the coming week.

Once again the crew has come through. First officer is making a bid for husband of the year once again and the chief engineer went above and beyond to tackle equipment procurement. Being aware that as captain the ability to find time to chart the plan in peace is hard to come by, so he quickly provided the “get away kit”. In a brilliant move it contains high speed, low drag, old school marine issue camo, because once you put it on you are invisible of course (I would run to the woods but it’s Missouri and I’d probably die of heat exhaustion anyway.. so I improvise) pic of the box and just a random tree attached…. Because you know… camo.

While these certainly are not the results we were hoping for, we have brought in a whole new team (who are for sure the answer to a prayer… God sent) and plans to come. Biopsy first, praying for benign and an EASY fix.

So as the words “ We’re not gonna take it”..from the great 80s band Twisted Sister play over and over in my mind I’m reminded “Don’t pick our destiny, ’cause You don’t know us, you don’t belong…We’re not gonna take it…”see what I did there… and that’s better than Baby Shark I stuck in your head earlier right?) I’m praying.

As always please send lots of prayer for benign results and water … yes water because maybe my liver is just mad at my mixology?

Who am I kidding..send tequila, lime juice and sparkling water… which when mixed makes ranch water… still water right?