Up and Running

The heavy exfoliation due to deep excavations of raking fingernails across my red, raised pulsing full body rash halted a few days ago. I know..thanks for the image.

I am pleased to say the itching has been successfully quelled thanks to putting 3 different high does anti-histamines on board. So things are “under control” in that regard. Though I laugh – snicker is probably a better word – at such bold statements.

Ha! Did he just say ‘under control!’

I am in control of precious little. In fact I shutter/cringe at such tomfoolery.

The only thing I control these days is my attitude and I am probably batting @ 250, with a low on base percentage, high number of popups, more strikeouts than walks, and a lot of swings at balls outside the strike zone.

Even so, I am still swinging and that’s something.

Each day since I have been home has gotten better.

The fevers have also subsided. I tossed the 24 hour Tylenol and Aleve regime in the trash.

I am no longer wheezing and sputtering up the stairs like a fish out of water.

I even kicked on the running shoes this afternoon and got out there.

I am sure it was a sight to behold. Some combination of:

Took me twice as long as normal to do a winding, breathy route around “da hood.”

But, again, I mean I swung at it.

Thankfully none of the ravenous mountain lions or marauding packs of coyotes decided to cull the gimpy dude with the hair follicles trailing behind him like a path to an easy meal.

Getting my “run on” is good too because on the way back from the doctor’s office in Denver yesterday, our 2012 Subaru lost its mind. After a series of tows to different shops, it is looking like the car is in need of a complete lobotomy. That is, engine + transmission + flux capacitor repair.  That will all equal a new car more than likely.

Needless to say this is not the financial blow, time sink or aggravation we were seeking…though there is never really a good time. Throw it on the pile.

Back to that attitude, it needs to be said – I am glad I was with Sarah on the interstate as we limped our way off the highway, a precarious situation. I didn’t freak out. We didn’t even fight or panic. And though I would have preferred it to just be me in the car, I am also very glad the boys were not with us.

So, all that is to say…

I am getting there even if I am not all here.

Big Smoochy-woochy,

Leland

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Whigging

Walked out of the hospital @ 4:30pm yesterday.

Getting home was a surreal, wonderful experience.

Sitting on the front porch with a spot of tea, feeling the fresh clean air and hot sun,  getting back to hanging with my two favorite critters and their Mom-  totally righteous Dude!

That being said, the transition back to normal life has been a challenge after 10 days on the “inside.”  Seems when you take the cancer patient out of the hospital, you are still left with the cancer patient.  And my stay at U of C seems to have left an impression.

The IL-2 was not only the climatic last stage of treatment but proved the toughest, as advertised.  I had 6 spikes of fever (4 over 106), hot then cold then hot again, sweaty mess, nausea, headaches, rigors (uncontrolled full body shaking lasting 30-45 minutes), forced bed rest due to blood pressure crashes which meant if I wanted to “use the facilities”I had to whiz in a urinal in bed (which is awesome when you are shaky and they are continuously pumping you with fluids; and quite fun when a crowd of people come a-traipsing through the door- which they do frequently), and I didn’t sleep for 48 hours except for heavy drug induced stupor. Grog!

Here I am flanked by ice packs with my go-to cheesy grin.

Getting out of the hospital,  I had this vision of returning home and pouring myself into bed and zonking for 12.

Yeah, not so much.

Walking up a flight of stairs or the half mile loop at the end of the block leaves me huffing and puffing, my body is marked up from all the needles and tape ripped off (I hate tape it should all burn in hell), I have entertained several uninvited high fevers, am very flushed and bloated especially around my peeling eyes and red face, and my sleep is stuck on hospital time with lots of interrupted fits and turns punctuated by general thrashing. The latest joy is a full body rash. I am itchy as hell and was up all night, calling the on-call oncologist team multiple times in the wee hours of the morning as I scratched my skin raw like a poor flea infested dog. I did discover an  ice cold shower stopped the itching for 1-2 hours. But, seriously, who in the hay wants to take a frickin cold ass shower at 4 in the fricking morning? Um, “me” I guess.

Finally, we are expecting my hair to drop any day.

I am sharpening my purple eyebrow pencil and looking for a Pedro wig.

I also downloaded an app to sample a few synthetic hair styles.

Not sure what this look is.

This one I am referring to as the Curt Cobain.

This is my current front runner.

In meantime, we are hanging out, waiting for a miracle, working through the side effects.

The TIL study has the full power to deliver one and does for 25% of the people that endure that madness; while around @ 25% achieve some benefit.

I am hoping the plan is to be in the miraculous category.

“Stand up tall, pretend you are strong, in the hopes that you will be.”

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Day 0

Typing fast since I am running out of time before the “big event” starts and I am going to be down and mostly out-of-it for the next ~ 60 hours.  Reps from the pharmaceutical company will arrive in my room with, I am told, an entourage. They will perform a minor magic trick as they thaw bags of my killer t-cells grown in the lab. I hoping for a dry ice style smoke experience and maybe a Stonehenge effigy dropped from the ceiling.

So commences the end of chemotherapeutic agents and the start of final stage of interleukin 2 infusions. Let the “fall risk” / forced bed rest / fevers/ heart monitoring / help peeing / uncontrolled tremors / and who knows what else begin.  Thankfully there promises to be drugs and expert care involved.

Some people have been known to perform this high wire IL-2 trick from the comfort of their homes. I would rather be here. CU Hospital is a great place. The doctors and nurses have been and are amazing. They have cool response, found in every one of the staff’s lexicon, to the phrase thank you, “of-course.” It reminds me of Chick Fil-a’s “my pleasure” or The Prince Bride, “As you wish” – as if you never needed to actually say thank you, like they live for it. Whether or not this is actually true, its nice.

A few more days to go! I have been looking at this experience as another marathon or physical challenge. We are on the last 10 miles or so, the “back stretch” as “they say.” Just like in some of those past experiences, I am thinking about family.

I have seen Sarah almost daily and the boys either in person or facetime’d. Its not the same.

I miss my girl Elsa. What a doll.

Home soon!

One last thing before I am bound to this bed – THANK YOU for the emails, letters, meals and help you have provided Sarah, and for the visits. I can brag on the mountain of letters received, the chocolate I have been handing out to the doctors and staff like, ah, candy and all the well wishes.

See you in few days, I’m going in.

Leland

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Creepy Chemo Brain

I thought being in the hospital might provide ample time to catch up on books, games, shows etc …however I find it hard to concentrate. Supposedly this phenomena is referred to as chemo brain. I could confirm its a real thing if I could only think about it long enough (har har).

Since people are asking I thought I would provide status with a few pictures and captions.

Currently serving 9 to 11 days at University of Colorado Hospital

This is my room.

I am sure it is 2x as big as a prison cell but it reminds me of one. I can imagine now what being in prison is like. I advise against going there. Am pretty sure it would suck.

Below is my bed. one thing i have relearned is that in a hospital this is apparently not meant for sleeping. This is instead where the aliens come and perform their scientific experiments on you in the middle of the night.

The aliens demand that I provide this yellow juice as payment to them on a near hourly basis.

Tried to convince my son, The D Man, that it was freshly pressed apple juice, suds and all today. He did not have me pour him a tall Styrofoam cup of the stuff.

These are books I am not reading

The one on top is called Emotional Intelligence. I am not intelligent enough at the moment to read it. Verdict is out on whether this will change in the future regardless of the chemo brain excuse. Also, and btw, I find it ironic that a book about emotional intelligence is sitting on the top of the stack. Antithetical?

This is my shower. Sarah and I now have a walk in steam shower at our house. This one might be better. Being able to get disconnected from equipment and clean up is lovely.

I am grateful that this shower is not in prison.

This is a power cable – I know, “shocking.” Oh yeah, I still gotsit.

Power cable is hooked to this robot (okay not like Lost in Space Robot, that would be cool, but I have to entertain myself – nerd – somehow)

The robot is hooked to me 24/7 via 3 cables which make a “picc line” which is mainlined to my heart. The three cables I refer to as my “utter.”

I do find exercise is important. This is me dancing in my room

Napoleon D got nothing on me party peoples.

When I do escape my room, I walk these hallowed halls in my cool blue COHAUS socks. Yeah boy.

 

I see some things that remind me of bigger things. Joking aside, I am grateful that only the first 2 days were real rough. I pray for the people I see in halls. It could be a LOT worse.

This is me with hair.

I did one of those websites where you can see yourself based on the progression of hair loss (in this case in the next 7 days). I was shocked at how dead sexy I look.

Love you.

Lee

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First Few at COHOS

The first days of my admittance at University of Colorado Hospital or COHOS (sounds more exotic and hotelish to say COHOS, pronounce Co-HAUS) were a bitch.

Sorry for the language – not really.

I found out over the last few days that its okay to swear profusely and often. Its true. I mean a doctor told me this was the case and you know, most of them are always right, right? He said it has been scientifically proven that swearing helps with pain management.

Turns out there is quite a bit of research on The Google talking about it, even made it as a wikipedia topic.

https://en.wikipedia.org/wiki/Hypoalgesic_effect_of_swearing

Have to admit last night I took the Doc’s words at face value and laid out a colorful stream of choice and unimaginative words directed at the hospital, the doctors, nurses, techs, the meds, room, the wall, the floors, the ceiling, the bed, the dark, the treatment, my situation, God, Jesus …etc, etc, etc.

My practice of this newly discovered pain management technique was in direct response to a few rare side effects of the first chemo treatment (cytoxan).

One was a general lack of peeing, despite the fact they loaded me with fluids. I looked like the Stay Puff Marshmallow Man and, as my Mom would say “adding insult to injury” gained 14 L-Bs in 36 hours.

Likely related, I had epic back pain. At one point I thought in the middle of the night that I might lose what little brain I have left. Made we wonder if they should have a “Screaming Room” at hospitals. This might prove therapeutic.

That same doctor told me that it has been equally proven that laughter can also help cure sickness. I think we have all probably heard this in one form or another before. I think the person credited with making this concept popular was UN Peace prize winner and honorary doctorate holder, Norman Cousins.

Dr Norman Cousins: Anatomy Of An Illness

Here I am at a convergence of ideas or experiencing a little “synergy.” We are talking swearing, laughter and my desperate desire to sleep last night rolled into one.

I am thinking about my favorite, all time coherent and imaginative set of swear words…Samuel L. Jackson spouting a bed time story.

Parents can likely relate to the above.

Its funny.

Likely incredibly healing.

I am just not sure I am going to tell the boys about it, yet.

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Hospi-TIL

I am heading to UC Health hospital in Aurora for an extended “vacation” starting Wednesday, Sept 5.

My all expense paid stay is part of a clinical trial and will feature 7 glorious days of lymphodepletion /chemotherapy, followed by an infusion of billions of white bloods cells (specifically ‘Tumor Infiltrating Lymphocytes or TIL) and then, supposedly the fun part, 2-4 days of Interleukin-2 aka “IL-2” or a cytokine/signaling protein for the immune system. Its party time.

If you want to read about the study – http://www.iovance.com/our-science/til-platform/ or you can geek out on science if so inclined – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3462483/

Its been an eventful few months just getting here.

Starting with some evidence of progressive disease in the lymph nodes of my neck and along the liver, a short accounting of the last 2 months includes: 1 PET Scan, 2 CT scans of head /neck/ abdomen, 2 MRIs, 4 lab draws, 1 surgery, 1 colonoscopy, eye exam, a few millions doctor’s appointments, and a some different heart tests. Along the way, I had colitis and a rather unpleasant, festering infection in my neck.

If the brain scans had shown progression, if the colitis had not resolved with antibiotics or the infection had not healed, I would not be eligible for this exciting new trial.

Two months ago just getting here was daunting and there have been as you can imagine a few moments of fear, doubt and trepidation. But we are grateful to be here now.

Anyways, I don’t have prophetic or inspirational words of wisdom to offer tonight. Surprisingly or perhaps out of sheer delusion, I feel good. I know it probably makes no sense but for the most part I am at peace and enjoying life.

Work has been awesome and full of fun and challenging opportunities. I am receiving phenomenal medical care. We love our new house. The kids are back to school and do stuff to make this Dad amazed or beaming on a regular basis. Even Sarah has claimed that she will continue to love and care for me when I am sporting Anakin Skywalker’s look and the hair falls out.

Anakin Skywalker

Strength permitting, I will try to post a few times from my hospital bed.

Together, perhaps we will contemplate the delicate intricacies of mustard gas derivatives as they stampede through my veins.

May the force be with you always.

Leland

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Moved

13 years ago we moved to Monument Colorado with a plan. The new place was great but we ultimately longed for trees and room for the boy (eventually boys) to make some noise.  We figured it would take 5 years to get there.

Fast forward and life, mainly cancer, interrupted. Our plan yawned and stretched out. Stuck in the metaphorical woods, it often felt more like up we were up the creek.

——-let me stop the train a second by saying that in a sometime troubled world, I think a new house sits squarely in the realm of  “high class problems.” Kinda like watching “House Hunters” with somebody wailing over the wrong color of counter tops in their otherwise perfect, dream home. Oh the horror! The horror! Somebody 9-1-1 a whaambulence. In the grand scheme of things to get upset about a bedroom being too small I mean really…take a walk down the the cancer ward.

Makes me think about this study I read one time comparing hunter gatherers and modern man’s stress levels. Turns out that the dudes and dudesses running from hungry lions had lower overall stress than all of us plagued by our “civilizationisms.” Maybe the outside world is not the problem and never was.

In one of these meetings I have gone to for a long time, I had long been secretly skeptical about men and women who claimed God had blessed them more than they could have imagined. Irrespective of the cancer situation, I kind of let the idea of having that experience go. Not that I wasn’t grateful. Its merely that I all too often suffered a case of the glass-half-empties. Things always seemed like they could be a little better, even by the very slightest degrees.

I think the turning point happened @ nine months ago. I was doing a bit of HCP (high class problem) self talk about why we had not moved yet. A moment of honesty ensued. I realized that I was thinking I somehow deserved to move. That something inherently in me deserved it. Then I realized what total bullshit that was, even though I had idea for a long time (just because ideas have been around awhile does not make them right; in fact its probably more of a case for them being wrong).

The truth is/was I am lucky to have the boys, Sarah, my job, a billion other things and in light my recent experiences, the next breath. I didn’t do anything. It was not earned or deserved.

Things fell into place shortly thereafter. Its been a cool experience and I am glad to be sharing the experience here.

I’m moved.

Thanks for all for you love and support.

A Window In New House

 

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Frame it

Wow. Lots of relief and gratitude tonight and some guilt for losing my mind a bit over the past week. Between the stress of waiting on news and the frenetic pace of work and everything else have had a few Fred Sanford moments.

 

Thank you to my wife Sarah for her eternal optimism and love as well as my Mom and Dad who support me in their extraordinary ways…doing for me what I can’t do for myself when in “Fred mode.”

Neither rhyme nor reason to this but Phish’s ‘Reba’ runs through my ears tonight.

Maybe its because there is no “frame it” song that I can recall and I hope the next time we get some rocky news I will be able locate a mental snapshot of Dr. H’s note above.

IMO I am supposed to try to remember these moments. To be dramatic (something I seem to gravitate towards 0-;) memories such as these can be like armor and sword for the next heart attack; as long as I am willing to locate them in the mental view finder and focus. That’s how faith gets built, at least for me, on a foundation of experience.

Its challenging though because there’s probably always going to be that niggling doubt that this time actually is the big one. Yeah-yeah I may have thought so last time, but this time is it. Those previous disasters were mere dry runs.

If I were smart I’d see that every “big one” starts with that same threadbare internal dialogue that its the “real big one.”

Instead, before I know it, I’m right there with Fred hollering, “Hear that Elizabeth I’m coming to join you Honey.”

Anyways, such as it is, we bag it and tag it…and that’s okay tonight.

 

 

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Everything is good…wait, um, just kidding

Had my scans last week. They checked my brain @ CU hospital in Denver and the rest of me in Colorado Springs. Good times.

The brain looked great – nothing new in terms of tumors and the previously treated lesions were smaller. We like nothing new. Smaller is better too.

The ‘rest of me’ part was where the results got more interesting.

After waiting for an hour and reminding myself to schedule future appointments in the morning in order to avoid  oncologists-are-progressively-later-by-end-of-day-syndrome, I saw the doctor.

“Yeah the report is very good. No progression. Tumor in lymph node in neck gone. Everything else is smaller.”

I gave him my best Tony the Tiger impression, “GGGGGGRRREEAT,” as the next 3 months of existence rolled around the back of my eyelids- scenes of relief, appreciation for current treatment, a feeling that we can keep doing what we are doing.  A general sense of yes!

Image result for pictures of relaxation

Business as usual or as usual as unusual has become. All made more tolerable with the latest news.

“It says in the radiologist’s report that the lesion in your liver has calcified,” he went on.

I guess he figured I had waited an hour, might as well make this more than a 2 minute visit, earn his keep.

“In other words, that tumor is likely long dead. Shall we look?”

“Sounds good,” I say, “I mean you know I like me some good calcification of tumor in liver photos as much as the next guy.”

“Err, wait a minute. What is this dark spot in liver?”

He continues,“Was that there before?”

“Last I knew you were the expert Doc.”

Okay, I wasn’t that snarky. I was too busy getting tossed around by another series of thoughts flashing by, as he cycled through magnifications, angles and images.

“The long and the short of it” is there’s potentially a new tumor in my liver. We don’t know for sure. Could be an anomaly in CT imaging though Doctor was not overly optimistic.

Scheduling a PET scan which should be more conclusive.

So we wait…for insurance approvals, appointments and results.

Do I have any sage wisdom to impart in the meantime?

Um, no.

Its back to basics, to the unusual usuals, trudging the road to happy destiny:

  1. Faith
  2. Family
  3. Friends
  4. Diet
  5. Exercise
  6. Other?

Will let you know when we know more.

xoxo

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Alright Already Daedalus

I almost didn’t go to LA. Within days of starting BRAF/MEK last September, I began to feel better. No more exhaustion. I could eat.  Few side effects and a general feeling of wellness, like something was working. And ‘bonus’ there were less doctor visits, no regular infusions, less pokes and prods. I just had to pop a few pills on an empty stomach 2x/day. Subsequent scans indicated George Costanza’s archenemy, ‘shrinkage.’ In other words, the treatments was working. The cancer that started creeping back at the end of June was put on hold again and life returned to ‘normal.’

The problem is I’ve never been that great when things are too good.

And while 70% of people with Stage IV melanoma react positively to new medicines I have been on, ‎Dabrafenib and trametinib, the honeymoon doesn’t last for the majority. There are few “durable” results. Median response is 24 months. So I could not reasonably expect for the new treatment to last forever.

I knew that going in. My plan had been to start investigating different medical interventions as soon as I started the treatment. My thought was I could then put this combo on the shelf while trying something new. We could always return if needed as a last resort, before I blew the tires or exhausted the combo altogether. I discussed this idea with my local oncologist and he agreed.

“But then again,” he said, “conventional cancer treatment would suggest that if a current treatment is working you stick with it.”

Translation, just keep flapping those wings Icarus!

Icarus was the son of the famous craftsman Daedalus in Greek mythology. His father was the creator of the Labyrinth, a huge maze located under the court of King Minos of Crete, where the Minotaur, a half-man half-bull creature lived. In order for the secret of the Labyrinth to be kept, Minos had then imprisoned Daedalus and Icarus in a tower above his palace. Daedalus managed to create two sets of wings for himself and his son, that were made of feathers glued together with wax. He taught Icarus how to fly and warned him not to fly too high, which would cause the wax to melt, nor too low, which would cause the feathers to get wet with sea water. Together, they flew out of the tower towards freedom. However, Icarus soon forgot his father’s warnings, and started flying higher and higher, until the wax started melting under the scorching sun. His wings dissolved and he fell into the sea and drowned. 

Most instructive but not necessarily easy to practice when you find yourself flapping through cerulean skies with a Rocky Mountain view. I mean why not wait?

Thankfully, call it inspiration/an amazing sense of timing/a kick in the pants/an extra shove in the right direction for a simple moron/I-dunno-know-what, but the following post wound up at the end of my nose a mere 24 hours after entertaining that ‘wait and see’ attitude. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/ive-repeated-it-endlessly-if-you-have.html.

The gist is, in Lelanglish, if you have melanoma is GO SEE A MELANOMA EXPERT. There is a good study associated with the post to back that sh– up. Bam!

It makes sense really, the more you grok it. A general oncologist probably sees a few melanoma patients a year. An expert, or someone who specializes in melanoma in this case, sees melanoma patients all day, every day, 50 something weeks/year. He is attending the conferences, working with the drug companies, teaching the classes, doing the studies, living the life. Is this akin to the diff between a general practitioner who set a few broken bones in residency and an orthopedist? All I know is, if I break an arm I am going to the bone doctor. Same logic here.

Needless to say I went to see my old buddy and melanoma expert, Dr. Omid Hamid at the Angeles Clinic, in Los Angeles last week. Its sometimes can be an amazing experience when things are done the way they are meant to be. The ticket was cheap. The appointment was on time (miraculous!). The advise was likely priceless and potentially life saving. LA was fun and as always, an experience. Best of all we have a new treatment plan that hopefully will not involve me flying blissfully off into the sunset before somersaulting miserably into the ocean.

So that’s my unsolicited advise for the week to anyone with a tough diagnosis. I think the same principles apply to edgier medical cases, melanoma or otherwise. Its cliche but knowledge is power. Sometimes we have to get off the duff, not wait for things to go bad, and go get it. If someone heeds that message and takes the extra time/expense/effort that saves his/her life, hopefully that makes up for 3 months of silence here.

Merry Christmas, Happy Hanukkah, New Years and Holidays!

PS. Thank you to my family Martin and Cherie and the boys for your mitzvah in LA.

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