my odyssey from lung cancer diagnosis through lung cancer surgery for Stage 1 in Mar 2012 to as of now, May 2013, trying to survive Stage 4 lung cancer with metastasis to the brain
Boatloads of science can be discussed but for today having just begun Chemo Round #3 featuring a switch from (Cisplatin+Alimta) to (Carboplatin+Alimta) … I can share that after my first (Cisplatin+Alimta) treatment I wanted nothing to even taste much less eat … I lost 20 lbs living on popsicles and Boost for the first three weeks of Cisplatin … following today’s (Carboplatin+Alimta) I treated Megan to lunch at Panera Bread. We both inhaled bread bowls, hers potato soup mine tomato soup +++++ I also went for their ‘big kids’ grilled cheese sandwich. …. The eating frenzy was not over without a coffee ice cream cone for desert at Rakestraw’s With two of three right lung tumors shrinking and the other one arrested, I salute you Cisplatin … you are the baddest-ass butt-kicking descendant of Mustard Gas around.
Today I sing of your cousin Carboplatin!!! I need to restore my body … thank you for the appetite. More to follow but for now it’s all delicious!!!
-- Patrick Leer
Who can forget the scene from the movie “300” where Gerard Butler screams, “Madness???? This is SPARTA”, before kicking the Persian messenger into the pit? … epic and heroic There is nothing heroic about crawling around my house on my hands and knees trying to get up at 5:15 AM Thursday morning … life & death issues become swallowed by loss of physical and mental abilities from chemotherapy … “Madness??? This is Lung Cancer” Nietzsche was sooooo wrong … what doesn’t kill you does not make you stronger it leaves you wounded and sucking hope out of you before dawn breaks. “NO food or drink for 4 hours before CT Scan” only added to stress as 5:30 AM was the cut off and I was still crawling unable to get up with 15 minutes to go. Arriving at 9 AM I am given a 16 oz cup and asked to drink it over the next hour … an hour? … now this is “Madness” ! … I could down the whole damn thing in a gulp I am so thirsty! … Chemo has so kicked my ass that I needed physical assistance getting on and off the CT table this has never happened before in my life … decades of helping Patti to struggle to get on and off exam and scan tables as her MS symptoms progressed ... flashed as harbingers of the increasing probability of a life of dependency for me. CT was the most thorough of my life including neck, chest, abdomen and pelvis with and without contrast and of course an hour of super juice. … On the last pass the IV pulled out creating quite the macho bloody Hollywood moment … madness? … no cool! … replaced we finished successfully on the next pass … macho moment faded to embarrassment as I required help to get down.
Back at home inches of paperwork waited while my chemo fog was light … miss crossing a “t” or don’t dot an “I” and I’m toast … 6” of total cancer paperwork, 4” of it in just last 11 weeks since DX changed from Stage 1 to Stage 4 with brain mets … at least it takes my mind off of scanxiety. For the layperson’s interpretation of all the below medical speak read “Two out of three ain’t bad” … if you are interested in the medical minutiae then click and read the report
Chemo while yielding good results
continues to annihilate my strength and stamina. … Cane facilitates my
struggles to get up whether from a chair or fallen on the floor.
Most important it empowers me to walk
and/or stand safely … walking was disappearing from my life … yet the cane has
restored my options.
Temporary or permanent remains to be
seen.
FYI … CVS had dozens of choices,
Walmart one, and Target none.
Meeting with my oncologist to discuss yesterday’s CT Scan of neck, chest, abdomen and pelvis … In ‘lay speak’ … after 6 weeks of chemotherapy two of the three tumors in right lung have shrunk and one has not grown … … hugging and or hi-fiving anyone and everyone … it was time to pick up Patti for her annual mammogram … ‘family assistance’ was requested because Patti can be a most uncooperative patient, last year even slapping the tech ending the unsuccessful session. Not much different this year except no one got hit …. Patti simply reinvented boundaries of cursing, swearing and yelling even with her own daughter trying to help before another mammogram bit the dust … A little time with the ducks, Papa John’s Pizza and Misto Shakes from Rita’s was next on the list …
Picture collage captures me “preparing” in waiting lounge for my meeting over lung cancer scan and our post unsuccessful mammogram picnic in the park.
A week ago I wrote … “Not since our daughter was born have I known such joy as this morning.” Unfortunately lung cancer is not a diagnosis but a nightmare ... the week of mind numbing euphoria ended with that same daughter noticing an inflamed lump on my throat … ... insisting I drive to Andrews & Patel ... I had the oncology nurses take a look … when words like ‘lymph node’, ‘lymphadenopathy’ and even ‘lymphoma’ are used in a conversation ... it’s time to both freak out and remember my mantra “take control do not let protocol kill you”. Is it a new cancer, the same cancer or no cancer? Cushing's syndrome? Could it be a cancer of the adrenal glands? … with my luck, that "only about 2 people per million develop this type of tumor" is no consolation. With a clean MRI of the brain only 7 days ago, it is reasonably safe to look to the lungs, throat or lower body for an explanation. Actively monitoring the gullet through the weekend it never hardened, no change in color except post shower, no impairment to swallowing, breathing nor eating … just a soft a squishy gullet like a turkey’s. Unbelievably zooming in on pics from Thursday at the pool the gullet is visible. This morning – “turkey gullet” became “buffalo hump” as my oncologist knew exactly what we were talking about except since we were only looking at the throat we never noticed the inflamed soft tissue at the base of my skull.
We “agreed” to put the beginning of my third round of chemo, which was supposed to start today on hold, … and get a CT Scan from throat to pelvis and meet again on Friday. Fighting to outlive lung cancer I do not have time, I want to know NOW what’s going on Office called back … CT Scan “ON” for Thursday AM!!
... I am quite happy once a day taking my ancient flip phone outside ... open it and say "Beam me up, Scotty" and wait patiently .... now , at the risk of becoming a 60+ year old sedentary geezer collecting dust in front of a desktop PC trying to outlive lung cancer ... it is time to include the smart phone generation sooooo beginning today some entries will only be available in the ... Facebook edition of My Lung Cancer Odyssey ...
Fighting to outlive lung cancer is all consuming … 24 years as a Multiple Sclerosis spouse caregiver is about 'anticipation' of care needs … so how did I get so distracted? Growing dependency has tripped me time after time … There are days chemo fatigue and fog not only leave me exhausted simply trying to get up and down … but unable to drive … hell I have even found myself stuck on a commode and bathroom floor. The combination of frustration and embarrassment is maddening ... For example, toe nails!!! One piece of advice I will pass along is take care of all personal care needs BEFORE beginning chemo … especially cut your toe nails!!! … there are days I can barely lift my feet to get socks on or tie shoe laces. … as the weeks wear on it all becomes beyond embarrassing and I find myself stuck on the bathroom floor having fallen off the commode trying to cut my toenails. 5 weeks+ into chemo (Cisplatin+Alimta) with at least another 3 to 4 weeks to go is ravaging so much of the minutiae of life. … As a spouse caregiver of a quarter century the only universal truth is that I will never have anyone to care for me and that is becoming increasingly scary. Scary enough to yes ... try a pedicure! I did not even know they were available for men but Salon On Mainwho has been so kind with my cancer hair suggested ‘THE NAILS First’.
OMG!!! Sitting down I soared from embarrassment to rapture as the Shiatsu Massage Chair started on my back and neck while my feet soaking in a warm tub were massaged with water jets. … Staff was wonderfully patient perhaps even a shared bemusement with my wonder at my new feet.
The absolute best $25 I have ever spent. Not unlike lung cancer – it’s about stigmas and day after day I am learning that stigmas are bullshit! As long as I can find $25 I will never find myself on the bathroom floor trying to cut my toe nails. Thank you "THE NAILS First" for my new feet and thank you Salon on Mainfor the suggestion … it’s possible that a good personal care team may trump a cancer team.
-- Patrick Leer
I am humbled by the sudden surge in views,
readers, tweets, retweets and social media I do not even understand of interest
in My Lung Cancer Odyssey.
I pray it’s not some ‘waiting for the
train wreck syndrome’ since my DX soared to Stage 4 with brain metastasis.
When my daughter and I first met with
Stephen Milito, MD of the Oakwood Cancer Center on May 13th, he was the first cancer person when asked to
offer a timetable … “unchanged” 6 months
to 18 months to live … asking him if he ever wins he smiled and said he could
not do this if he did not.
‘Changed’ by 10 whole brain radiation
treatments he met with us smiling and saying I’ll see your back in 4 months …
reading the radiologist report was even more encouraging.
I’m going to deviate from my normal
style here because I know enough readers are facing my situation and I will
simply post the diagnostic radiologist report (personal information redacted)
Both I and my daughter could only
smile at the first line “prior gamma
knife treatment”
… there was NO gamma knife however the
precision targeting of whole brain radiation on my mask was so effective it
fooled a radiologist … the rest reads only better
I pray for others it will provide
hope when facing Stage 4 Lung Cancer with brain metastasis … it is not “end
stage” lung cancer – that stigma has got to go.
Not since our daughter was born have I known such joy as this morning.
Springing up I hugged my radiation oncologist Stephen Milito, MD and Medical Director ofOakwood Cancer Center ... maybe a half dozen times (in a manly way of course) … fighting back emotions.
Whole Brain Radiation was effective, MRI looked good … next checkup in four months. … yeah there is still some metastatic gunk in there but benign and may or may not need cyber knife or gamma knife.
I was struggling big time not to lose it emotionally while trying to control a breaking voice talking and riding with Megan who shared every moment of this drama … It wasn’t until I called Patti’s Mom to let her know ... that she fell apart taking me down the happy tear trail with her.
It’s difficult to explain because lung cancer is bad enough but metastasis to the brain was my personal horror show … and will always be.
Except now I’ve got Stephen Milito, MD checking on my brain every four months while Margarita Gareis, MD with Andrews & Patel Associates is on the lungs with chemotherapy. … her next CT Scan is in about four weeks to evaluate how chemo is doing with right lung.
Nothing is cured and never will be ... but with the right team ‘lung cancer’ can hopefully become a treatable chronic illness.
Simply hearing my next appointment is in four months is somewhat life affirming ...
Sometimes you just have to do things at volume 10 … As I walked into the house last night with all windows sealed and air conditioner blowing … my daughter asked “was that you making all that noise outside?” … laughing I explained one benefit to having an adult child at home is neighbors will just think it’s her. Old School that I am all the windows were down, cruising the neighborhood blaring “Iron Man” at volume 10 from my Cancer Mix CD … come on now who is really going to mess with a Stage 4 lung cancer patient except a world class a-hole. Googling cancer music I was surprised at the number of videos made by hospital staff … even music therapy for cancer programs … cancer and music who would have thought?
Only 3 months ago when my DX was
Stage 1 Lung Cancer I thought ‘scanxiety’ was bad. But now Stage 4 with brain mets,
scanxiety has evolved to full blown scangst and its scary.
Only the cruel irony of lung cancer
could schedule Monday’s critical, life
defining Brain MRI three days from the first anniversary of my first follow up
scan after successful lung cancer surgery to remove a 8mm nodule from left
upper lobe. Scan = NED (no evidence of disease) in medspeak … or in retrospect
it was the ambiguity of medical Fool's
Gold.
Unfortunately the Maginot Line
protocol of lung cancer kept everyone staring into lung junk every 4 months,
while cancer metastasized to my brain. …
10 whole brain radiation treatments
over 15 days in May successfully relieved the headaches and pain of brain metastasis
clearing the way for 3 rounds of chemo over 9 weeks. …. Unfortunately headaches
‘unexpectedly returned’ and I get my first dance with Stage 4 scangst during
Brain MRI on Monday … and it’s freaking me out.
Following Friday’s saline drip, my 'personal nurse navigator' suggested a distraction, “Pacific Rim”. Arriving a bit
early we had time to play in the theater’s arcade, where Megan whupped me without
mercy … no playing the cancer card with her.... and as a fan of Sons of Anarchy I was pleased to see Charlie Hunnman (Jax) playing the lead in a Hollywood flic along with Ron Perlman (Clay) playing a villain.
I found the break was helping me to untangle myself from my own personal tentacles of scanxiety / scangst. Tomorrow is not in my hands but today is.
Even found myself whistling “Always
Look on the Bright Side of Life” …
178 lbs (80.7 kg) ?? … I’ve lost 12 lbs (5.4 kg) since chemo began.
Tuesday was ‘blood work’ day and the
chance to compare numbers not concepts like ‘fatigue’ … a week after Round 2 is
far better than a week after Round 1 when viewed by the numbers.
Reviewing numbers with my oncologist …
chemotherapy has been whuppin’ my ass for 29 days and nights …. Who would have
thought ‘hearing’ would suddenly change the tide?
Megan jokingly observed the advent of
my ‘geezer hearing’ noting in her opinion my intermittent loss of ability to hear the beeping
of my thermometer a week or so ago.
Shortly I was noticing intermittent
loss of hearing and/or ‘ringing’ in my ears.
Hearing loss apparently is a red flag
side effect of CISPLATINand not necessarily reversible. Soooo as my oncologist
phrased it we are "shifting side effect risks" by switching to CARBOPLATINfor
round three beginning July 23.
Time with Patti has been a constant
frustration through this past month of chemo … down from at least 3
outings/visits a week we have been lucky to have one … ‘focusing on my cancer’ the
absence of caregiving time gets in my head like negative energy.
Our daughter has been a godsend somehow
creating opportunity between everything else going on … we had a fun afternoon Wednesday
snacking on popcorn and popsicles in front of TV and catching some sun on the
back patio … all the time with ‘no lung cancer’ since Patti’s MS dementia and
cognitive problems prevent her from remembering.
3 AM Thursday I was awakened by my
ears popping, much like changes in altitude … except a headache remained … and frankly
a scary headache more like a mild version of the brain metastasis headaches of
two months ago.
Rummaging around looking for
ibuprofen awoke Megan who suggested adding oxycodone I had left around from
lung cancer surgery from March 2012. … next she reappeared with two DECADRON(4 mg) …
she had called ‘on call’ oncologist (at 3:15 AM) who suggested adding DECADRON to the mix
(it was DECADRON that had led the first
charge against brain metastasis). …. I slept totally soundly until the urge to
pee awoke me about 5 hours later.
The 'protocol' was always to re-scan brain and lungs a week or
two after chemotherapy was completed ... or about a month from now.
Determined to take control, not live or die by protocol, as offices opened, Megan began calling Andrews & Patel and I
calling Oakwood Cancer center … long story made short I have a Brain MRI scheduled
for Monday, 4 days from now instead of 4 weeks from now.
Fighting for my life I am learning is about a growing dependency on others. For a quarter century I have been my wife, Patti’s caregiver as her Multiple Sclerosis progressed through over 15 years of homecare and once in the care facility era I continued to be involved 3 – 4 nights a week with outings, dinner and above all always transferring her from her wheelchair to her bed. … It is what I believed was right and share in Caregivingly Yours. Since chemotherapy began and chemo fatigue and chemo fog tears me down day by day … I cannot risk visiting a care facility with my weakened immune system … I feel as much a failure as fatigued. Housekeeping from lawn mowing to house cleaning are losing to fatigue … even received a ‘friendly reminder’ from homeowner’s association about my driveway pole lamp not working. …. I’m sorry but if I genuinely had a ‘friendly’ home owners association wouldn’t’ they fix it instead of sending a ‘friendly reminder’ … I can’t even begin to count the number of times I have mowed lawns, shoveled sidewalks for injured or recovering neighbors. Then again I read through the blogs in my sidebar and realize how many are blessed with healthy and working spouses and companions. … Being able to ‘focus’ on my own cancer and treatment is unimaginable in My Lung Cancer Odyssey. Thank God we each have a story to tell or else we would be statistics. I am not without my own blessing, our adult daughter who has been transcendent since my cancer staging upgraded from Stage 1 to Stage 4, just 11 weeks ago in early May … but she cannot do everything … though she has been masterful when confronted with Patti’s Dad’s death, from informing her through keeping her Mom involved in his visitation and funeral … I cannot even imagine what that was like to navigate through her Mom’s dementia? ... plus look at me some days and not start researching palliative care. Megan's first attempt at changing lights was rebuffed by a hornet party in the pole …
… big mistake hornets … I may be chemo fatigued but with a spray can of hornet whup-ass now there is a "friendly" pole full of "friendly" dead hornets which I found the stamina to change myself with a smile.
Nausea and diarrhea is a helluva
start to a day, throw in chemo fatigue and I am left wondering why am I doing
this?
Wiser in Round 2, fortunately we had
arranged a saline drip for 1100, Day 4. … During Round 1, never even knew such
an option existed until Day 7.
Saline drips are all about restoring body
fluids and electrolytes.
To me however any and all time in the
chemo lounge is time with people like me. Chemotherapy is so much more than the
fatigue and discomfort of symptoms … it is about fear and hope … and only in a
chemo lounge can I find fellow travelers on the edge of life.
Maybe it’s too early to compare and contrast Round 2 with Round 1 … Fatigue continues to dominate … my world feels like it has been turned upside down and no energy to put it back together. ... Reducing risk of infection is paramount during ‘strong chemotherapy’. Yeah of course I can avoid people and I have masks … plus the second day each round I get a shot of Neulestato help boost my natural defenses. ‘Stronger chemotherapy’ caught my attention especially when I learned that Cisplatin was a derivative of Mustard Gas. … we are talking more than chemo here, we’re talking chemical warfare!
... (showing my age here) ... there are moments I feel like Slim Pickens riding the bomb down at the end of Dr. Strangelove.
Yesterday, July 2, began Chemotherapy Round 2. … preceded by 10 whole brain radiation treatments … and, of course, three weeks since Chemotherapy Round 1 of ‘double down’ dosage of CISPLATIN and ALMITA. Yeah, we talked about options like ‘reducing strength’ of dosage or even taking a ‘break’ of a week. Bottom line is that any break we give to me we give to cancer.
I learned that white blood cells can be boosted during chemo to help in the fight. Red blood cells on the other hand ‘can’ be boosted but at risk of also benefiting the bad guy, cancer … sooo instead blood transfusion was used … and my ‘numbers’ to begin Round 2 definitely benefit me. Does Round 2 ‘feel’ any different? … well, the smell of Megan cooking vegetarian chili from scratch won and I’m actually eating a bowl … it took over two weeks before I tried solid food during Round 1. Also yes … I grow increasingly grateful for your prayers, kind thoughts, and caring thoughts as I share My Lung Cancer Odyssey.
As the 20th day of “Round 1” chemo wrapped to a close, and empowered by our daughter we were able to enjoy and laugh our way through a family picnic at stream side … truth be told ducks got more than their fair share. It was a gulp of non-exhausted air and a ‘remember why’ moment in time before round two of three of chemotherapy for lung cancer begins today …
More important it was time for Patti to laugh, never quite remembering and or understanding that I even have lung cancer she has, through the intuitive guidance, of our daughter learned of the death of her own father, and participated as best as possible in his viewing and funeral…. Monumental, perhaps even unimaginable, challenges for someone with MS dementia and cognitive issues. Cancer can be so selfish to the lives of others. Patrick Leer
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.jpg "Brain MRI")
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.jpg "Round 2 (Day 1) chemotherapy")
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