Michael Whitley
@bodagetta
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Following
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Founder and COO of EngeniusMicro, LLC. Licensed Professional Engineer, MBA, 46m stage IV kidney cancer patient.
Huntsville, AL
Joined June 2007
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I am 42 years old and was diagnosed with metastatic clear cell kidney cancer on 9/3/2019. I had my primary tumor and left kidney and adrenal removed on 9/5/2019 immunotherapy didn’t work for me. Currently on Axitinib.
#kidneycancer
#mrcc
#immunotherapy
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Do you even have cancer if you haven’t cried in the shower because you’re afraid of what is next and you don’t want to die because you have so much left you want to do?
Nothing new is wrong. I just have scans coming up and scanxiety is visiting early.
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@DavidSteensma
I’m a stage IV patient and I’m doing well but I know that one day my doctors will be making that last note in my EMR. What you do matters. I feel such a connection with my doctors, it is beyond words. Thank you.
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The yellow filament ran out so I switched to the pink. I wonder who will end up with these face shields?
#HuntsvilleFightingCovid
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I got a preview of my radiology report and it’s stable disease! Nothing grew, nothing new!
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Got some not great scan results yesterday. Been trying to understand exactly what this means but I won’t really have answers until Tuesday when I have an office visit with my super-oncologist. Just trying to hold it together in the meantime.
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Scan tomorrow morning, so you know I'm sipping coffee working on budget spreadsheets and contemplating death from cancer. Just a typical Monday with stage IV renal cell carcinoma.
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Stable scan, rescan in 3 months.
It is nice to not only trust and respect your oncologist but also genuinely like him. Thanks
@brian_rini
and
@VUMC_Cancer
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Threw up all morning at my desk while working, thankfully I work from home. Then haircut and post office and back to work. Thank you zofran.
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First day back in the office actually working since July. Prednisone has a lot of bad but it’s also allowing me to walk so it’s necessary for now.
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Never wanted to hug a radiologist so much. My CT scan show shrinkage on the axi. “Lungs: substantial interval improvement despite the short interval followup. Multiple pulmonary modules have markedly diminished in size relative to the previous exam” see you tomorrow
@brian_rini
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I’m wearing my super comfortable cancer center tshirt that I bought for charity.
Apple store specialist: “oh do you work at The Cancer Center?”
Me: “no I’m a patient there!”
His associate: “awkward.....” 😂😂😂
#cancermuggles
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@ThanksCancer
I’m good = it’s tolerable
I’m great = I’m doing ok
I’m ok = I’m miserable but don’t want to bring down the room.
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#UromigosLive
was a great conference with even better people. I’m very grateful for the invite from my oncologist
@brian_rini
and glad to lend my 3D printed kidney for an award 😂
@BReinfeld
@TiansterZhang
@montypal
@Uromigos
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I’m tired. Renal ultrasound also included bladder and I’m overanalyzing her motions might have taken too long in one spot. Blood draw too. Results all pending.
Waiting for my results and my best friend nephrologist lost her grandmother yesterday, I’m so sad for her.
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I completed training today to be a kidney cancer advocate to my congressional delegation.
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I was raised that it is impolite to talk about money, but I don't think people talk about the cost of cancer enough.
I am very fortunate financially and none of this is a request for help.
1/5
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Cancer means learning what you’re made of while staring at waiting room carpet.
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Today is my 3 year cancerversary. In some ways it feels like the longest 3 years of my life and in some ways the shortest. I’m very happy to be alive.
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Tim James is a horrible human being. If you live in Alabama you probably know what I’m talking about. If you don’t, be grateful.
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I’ve had little anxiety over today’s scan until last night at 9:30 when everything hit hard. I cried uncontrollably for about an hour with the main thoughts of “I don’t want to die” and “I hope this is not the beginning of a lot of bad things” 1/2
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9/3/2023 is my 4 year cancerversary but today was my birthday. I made it to 46. We had a small cookout, far cry from the blowout pool parties I used to have but still a good time. I feel a lot of gratitude to all the doctors who have worked hard to keep me alive the past 4 years.
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What I will remember most about 2020 is how kind people have been to me.
I don't cry over sad stuff, but I get teary eyed every time I think of the kindness shown to me.
2020: Cancer progression, lost ability to walk, finished MBA, cancer stability, gained ability to walk.
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CT scan results are in. Nothing new and nothing grew. I’ll be at Vanderbilt next week to check in.
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@RepMoBrooks
I’m still embarrassed you represent me and Huntsville. This is irresponsible. Deaths lag new cases and Madison county and Alabama just had a record day for new cases. I wish you were a leader that could help reduce these new cases.
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@LibbyMbc
I had a rod put in my left leg in 2019 because I had a femoral neck bone met. It was an easy surgery and quick recovery but having to stop medication is definitely a concern I understand.
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Good news everyone. My liver enzymes are fully back to normal. And so are the rest of my labs.
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I’m turning 43 today. I’ve given my full name and date of birth to so many doctors the last 10 months that I expect a lot of birthday wishes. 😆
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I’m on vacation! 🎉... from Axitinib ... for the next 3 days....The fatigue is real. Thankfully I’ve learned after 3 days I have a complete reset and will feel awesome. Thankful my oncologist trusts me enough to make these vacation decisions.
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@RepMoBrooks
Congressman, you have a choice to use your words to unite people or divide people. Please choose wisely. Your district and the nation are watching.
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Yesterday I had my 3 month regular CT scan at Vandy to check in on the cancer. Yes, hard to believe but I still have Stage IV kidney cancer almost 3.5 years later. I wish I was in remission but I'm also really glad I'm not dead.
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Good day in my cancer. Labs are almost perfect. Creatinine hit 1.0 (with 1 kidney). GI doc says my biopsy was great. No cancer and no inflammation. My appendix may just a variant of normal. I got issues still but today was good news.
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Day 3 of steroids. I put on my leg braces (and cane) and walked out the front door, and down the road two houses and back. Then I cried. This is the first time I have walked down the road since Jan. I have small base to build from.
All I need is a base to build big things.
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@BreneBrown
you wrecked me with the 'over functioning' episode. I thought I was just good at handling 'big stuff' and hearing the hospital story was a gut punch for me because I have done that exact same thing. Trading 'doing' for 'feeling' is such big armor.
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Started back PT today. Just did an assessment and got some exercises. Last time I was here starting I parked in handicap and wobbled in with a cane. Today I parked in normal parking and walked in strongly with no assistance.
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@RepMoBrooks
People have control over their religious choice. Do you advocate removing those protections?
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Happy Valentine’s Day. Two years ago I was in the hospital and couldn’t walk (notice the wheelchair and armband).
I’m in a much better place today and wouldn’t be where I am without this guy.
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Back from
@VUMC_Cancer
and as always a top notch experience from
@JVentoMD
and
@brian_rini
. Cabo 60mg is treating me well. Everything is smaller, something maybe new on my liver but sub cm mentioned in the radiology report. Rescan in 3 months.
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I got surprised with Valentine’s Day dinner in the hospital by my boyfriend. His sister is a resident and worked out being able to take me to the solarium for an hour or so.
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Stable mets, no new mets, next scan in 3 months. I’ll take that as a win.
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A Kidney Cancer patient has published a book of his amazing photos. "This book is a journal of my first year travels as a cancer survivor. Three months after recovering from surgery, I sold everything, purchased a cargo van and set out across America."
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I’m fatigued out. Cried all the way to PT for no reason except I’m fatigued and my two year cancerverssry is next Friday and bringing up all sorts of emotions.
Taking a med break starting tomorrow but this song helped.
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Eating coffee ice cream. No one gets my “francie doesn’t like coffee ice cream” joke.
#alias
@RealMerrinD
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I can check “crying in oncologist’s office” off my bingo card. I’m good with my dx 99% of the time. But there was something triggering about being in local oncology today and it overwhelmed me.
Emotions can’t always be controlled and I hate that with my core being.
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Cried in my oncologists waiting room today. Just silent tears down my cheeks hidden into my mask while waiting. Nothing particular is wrong. I’m just tired of the grind of cancer.
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Research funding matters.
When I was diagnosed in 2019 google told me 8% 5 year survival rate. That was probably a little out of date. The most recent SEER data for my demographic is around 25% for 5 years. There’s a lot of work to be done but progress is being made.
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I’m resilient. Spent the morning in meltdown, then flipped the switch.
I had a great time at PT, kicked ass.
Looked at my scans again. It could be worse.
Back in the saddle at work too and ready to figure out the next next for my kidney cancer.
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I’m hearing from my doctor friends about people being diagnosed with RCC. So I made some cards for them to give out if they feel compelled.
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About to head in for day 4/5 of IVIg and wearing my new kidney cancer tshirt!
Had some BP issues yesterday during infusion but got them resolved.
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I got my HARD TO KILL bracelet today because I am. Support kidney cancer research!
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It’s been weeks since I left, or felt like leaving, the house for anything other than doctors or PT. I started steroids again last Wednesday and it’s made a huge difference. Went to Heather’s last night for burgers and conversation.
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Great news - my liver enzymes are back to almost the normal range. Cabo had spiked them a little
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I just finished a corporate presentation to about 130 business leaders and was more vulnerable than I have ever been. Cancer and gay were mentioned.
I have a vulnerability hangover.
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It’s my one year diagnosis cancerversary, my nephrectomy was on 9/5. I’ve been carrying around the pen my urologist used to mark me and my wristband in my backpack in an unused pocket. I found it a couple of weeks ago. I’m grateful for all the doctors who are keeping me alive.
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Moderna booster shot is in the arm.
CVS Lady: First or second shot?
Me: Booster
CVS Lady: are you immunocompromised?
Me: Yes
(CVS Lady eyes me up and down suspiciously)
CVS Lady: What you got going on?
Me: Kidney cancer, stage IV.Don’t I look good?
CVS Lady: well ok, yes you do
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Starting Cabozantinib today. Hoping this works with manageable side effects.
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I’m stronger today than I was yesterday. Two surgeon follow ups this morning. One has released me and one wants to see me in a year. I start steroids tomorrow for my nivolumab induced CIDP. I’m going to get rid of this walker.
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The truth is I feel really good and my logical brain has a plan even if I do have progression on today’s scan. But the emotional brain sometimes takes over and when it does it takes complete control. I eventually cried myself out and slept well.
#kidneycancer
#cancer
2/2
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Always a good experience at
@VUMC_Cancer
with
@brian_rini
even when it’s not great news. No rad report yet but looks like growth in the lungs so we had a model shared decision making conversation and I’m switching to Tivo. I’m looking forward to this change. 80 of Cabo was rough
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@eeyanmiller
I was doing great on my own until my boyfriend showed up at a dive bar while I was eating rotel dip and singing along to Tony Keith, loudly. 5 years later and he’s the best thing to ever happen to me. Patience.
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Colonoscopy results came in the mail: “biopsies: no cancer in the biopsies”. I might have cried a little. Didn’t expect anything different after talking to my doctor but it is one less thing to worry about.
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IVIg infusions today and tomorrow. In home infusion is the way to go. I’m able to get some work done
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I feel more stable walking and have been more active today than in weeks. Not sure if it is the IVIg day 1 or the 80mg solumedrol they pushed before the IVIg. Regardless I’m very happy.
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@MdBreathe
@GovAbbott
Pharmacists are professionals with a duty to protect the patients. They aren’t vending machines and we shouldn’t treat them like one. I expect my pharmacist to use their professional judgement in dispensing.
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9 years ago I ran my third and final half marathon in New Orleans and my friend Claire was the best fan support ever. This is a reminder to everyone. Do Epic Shit.
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@RepMoBrooks
I’m in Huntsville with actual physicians who treat actual COVID patients. Do you think they are withholding and hiding the cure? I understand you need to throw some red meat to the constituents every now and then but you are better than this.
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Really grateful for med and oncology Twitter and I’m thankful to be alive for another Christmas. Only one of you (
@brian_rini
) is my physician but I’m grateful to all of you.
Happy Holidays and Merry Christmas
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The worst part of cancer, for me, is the toll I know it is taking on those I love.
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Will be at Vanderbilt around 10, scan scheduled for 10:30, visit with Dr. Rini and crew around 11:40. I’m grateful to be able to do this in one day with minimal wait. If you’re at Vandy and see me say hello! I’m very stylish in a black tshirt and blue shorts.
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CT is scheduled for next Wednesday. Had a slight meltdown in the parking a garage after scheduling it for no good reason.
Sometimes I miss when I was less emotional. Cancer ripped me open emotionally and there’s good and bad with that.
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My two year cancerversary is on 9/3. Already thinking how I can give thanks to those who have saved my life because there have been multiple times over this period I thought I was going to die.
I’m still probably going to die from cancer,but I’ve learned that I am hard to kill.
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After my diagnosis I was in cancer panic mode. Learning all I could, I even had a subscription to uptodate for a while. Transitioning back to regular life has been hard. There’s nothing I can really “do”. I’m stable, and I feel like I have a good grasp on RCC research status.
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Not everyone dying from stage IV cancer looks sick and not everyone who has stage IV cancer feels it or knows it. Get screened. Early detection is key to effective treatment.
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15
Important life news. I have decided to start vaping. It’s albuterol flavored. Also I have pneumonia.
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#cancerpatient
has become such a big part of my identity since diagnosis that I'm having a hard time divorcing myself from it. I'm still stage IV but I am also so much more and I don't want it to be my primary identity. I want to remember what I used to be.
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My magazine debut has arrived.
It’s hard to put yourself out there, but trying to tell myself it’s important. PS (cover photo was taken at the height of prednisone moonface and depth of axi fatigue). I’m not always so snarky and round.
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Unofficial Scan results: stability. Waiting for full radiology report. Thanks to
@KidneyCancer
for following me around with a camera - I hope you got some good footage. As always thanks to
@brian_rini
for expertise and leading with the scan results when he walks in the room.
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Found out that a fellow kidney cancer patient passed away 3 days ago, it's so hard to lose people even though we have never actually met.
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I’ve never told anyone but I prayed every night from shortly after diagnosis for about a year that God take away my cancer because I had learned what I needed from it. And I prayed for others. And I always ended by asking that I ultimately serve God’s will.
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This fatigue is taking me down. Only a week in axi. I don’t understand it but it was all I could do to drag myself to get a shower and haircut today. I sat in the driveway staring at the wall when I got home.
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Got my order today from
@Prusa3D
. Still don’t understand how they can ship from the Czech Republic faster than most US companies can ship inside the US. More filament for
#HuntsvilleFightingCovid
some lubricant to keep the printer in good shape and some new print beds to try out.
1
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It’s hard to explain or describe scanxiety unless you’re in it I’m t-3 days to scans and it hit me this afternoon out of nowhere. I got in bed after work and silently wept under the pressure, then I could feel a panic attack building. 1/4
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When I was diagnosed with stage IV Kidney Cancer on 9/3/2019 I didn't know if I would live to see Halloween 2019. 2023 is a bonus. 1/7
4
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15
Made it a month on Cabo 80mg before I needed a break. I’m starting back today and I feel like a new man. Woke up feeling rested and full for the first time in a long time. TKIs are rough. It’s a slow grind.
1
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It’s been a rough week. Two friends dx with cancer, breast and prostate. One online friend died from kidney cancer. Just all hit me in the shower and I’m a blubbering crying mess. Hopefully will get it all out.
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Someone said it’s national boyfriend day. This one has been with me the past 5 years through literally thick (thanks prednisone) and thin (thanks adrenal insufficiency) and sickness and health.
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A year ago today I was recovering from a radical open nephrectomy. Today I just finished a socially distanced arm workout at the gym.
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