The Healing Power of Hope + Action with Bill C. Potts

Air Date - 03 May 2024

In this insightful episode of The Autoimmune Hour, host Sharon Sayler welcomes back Bill C. Potts, a five-time cancer survivor tackling his sixth battle with the disease. Bill shares more of what he’s learned on his remarkable journey of resilience and determination, emphasizing the importance of physical conditioning, the power of community, and the impact of finding purpose in helping others. Just some of what Bill and Sharon chat about are:
• Crushing the challenges of living immunocompromised,
• Sharing practical tips for navigating everyday life,
• Understanding the significance of the mental and emotional aspects of dealing with a long-term health diagnosis,
• Conquering the feelings of loneliness and the importance of self-advocacy.
• Discover the inspirational story of how Bill’s personal story and his book ‘Up for the Fight’ came to be, plus more…

More About Our Guest:

Bill C Potts is a five-time cancer survivor, with recovery from cancer #6 efforts currently underway. Bill has had a successful business career, is an IRONMAN™ athlete, and is a dedicated father of three, including twin girls. He celebrated 32 years of marriage with his remarkable wife Kim in the Bahamas. Bill lives in St. Petersburg, Florida.

Bill’s cancer journey has spanned 22 years, as his lymphoma is incurable and keeps coming back. Through this journey, he accidentally became one of the world’s experts on cancer – from the patient’s perspective. His book, “Up for the Fight, How to Advocate for Yourself as You Battle Cancer From a Five-Time Survivor,” has changed and saved cancer patients’ lives while inspiring Bill.

Learn more at: https://www.billcpotts.com/

* Your host is not a doctor nor a medical professional. Your host, guests, and all medical professionals appearing on the show share opinions only during our presentation. The information presented in this interview cannot substitute for the advice of your physician or other trained medical, healthcare, legal, or other professionals. Host(s) and guest(s) are not diagnosing specific conditions during the show. This show is not intended to diagnose, prevent, or treat autoimmune diseases or other conditions or illnesses. The information provided on UnderstandingAutoimmune.com, Life Interrupted Radio.com, and The Autoimmune Hour is for educational purposes only and opinion only. It is not a substitute for your own medical, legal, or other professional advice and care.

©2024 Sharon Sayler and UnderstandingAutoimmune.com

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Episode Transcript

(00:04):
Everything I to do not to slapsomeone I know. And I'm like,
it's pretty easy. It's one hundredpercent. And they're like, I'm like,
it's one hundred percent. I'm eitherone hundred percent alive or one hundred
percent debt. There's no odds,right, So if it's one in a
million of survival and I'm the oneand I'm still one hundred percent alive,
so you've got to be kidding me. But the here thing for me was

(00:25):
so real and still is. Cuemusic places, everybody places. We're starting
in three two. Welcome to theauto Immune Hour, where we look at
the rise of autoimmune disorders. I'vebrought together top experts that range from doctors,

(00:45):
specialist, nutritionist, researchers, andeven those recovering from autoimmune to bring
you the latest, most up todate information about autoimmunity and how to live
your life uninterrupted. Thank you forjoining us here on the Autoimmune Hour with
sharing sale. Always seek sound,legal, medical, and or professional advice
regarding any problems, conditions, andany of the recommendations you see here or

(01:06):
read here on the Auto i MuneHour. Understanding autoimmune and Life Interrupted Radio.
Join the Autoimmune Hours Courage Club.Sign up now at Understanding Autoimmune dot
com. Now back to your host, Sharon Sailor. Welcome back everyone to
the Autoimmune Hour for another brand newepisode. And I'm really excited about this

(01:26):
one. You guys have probably beenon pins and needles too, and I
just wanted to say, I'm sureat Sailor from Sharing Sailor dot com so
excited. I forgot to introduce myself. And you can find all of four
hundred and seventy plus episodes all overat Understanding Autoimmune dot com as well.
And tonight we have Bill c.Pots back. Yes, we had him
on at the beginning of the yearand he was just headed into surgery.

(01:49):
So recently I reached out and Isaid, hey, what you doing,
And when he popped on the screenthis morning, he said he was just
done playing tennis. So mill Is, it's an incredible guy. Let me
read his bio because it's just amazing. Bill C. Pods is a five
time cancer survivor, with cancer numbersix efforts currently underway, and he has

(02:10):
had a successful business career. He'san ironman athlete as well as a dedicated
father of three, including twin girls, and he celebrated thirty two years of
marriage in the Bahamas with his remarkablewife, Kim, and they live in
Florida. And his cancer journey spanstwenty two years as his lymphomo is incurable

(02:31):
and keeps coming back, and thenan incredible journey that he's had since then.
As I said, five time cancersurvivor, and when we last talked
to him, he was just headedinto surgery for cancer number six. So
I wanted to check in. I'msure you do too. Hey Bill,
good seeing you, Sharon. Thankyou for having me on again. I
was excited to be on your show. Oh and I'm so thrilled when I

(02:53):
reached out with an email just sayingHey Bill, how you do it?
And you said, I'm up andI'm ready to go. So I was
so surprised. Your resilience and yourgrid and your fortitude just leave me awestruck.
Thank you. That's nice of youto say. Now fill us in

(03:13):
a little bit what you've been upto. Like I said, when we
popped on the video here, yousaid, I'm just got in from playing
tennis, which was not the answerI was expecting. Bravo, Thank you.
Part of my journey. The lasttwenty two years. That has really
made a big difference for me ismy physical conditioning and being in good physical
shape. So I'm in essence soundsodd to say it, but I'm in

(03:36):
essence training for when my LAMB fomacomes back, and so I seem to
be able to know when it's timeto ramp it back up. So I'm
always working to make sure that whenmy LAMB foma comes back, I'm in
the best physical shape possible because thathas really made a big difference in my
journey. And so after we spokelast time, I had a prostate surgery

(04:00):
and so I was at a commissionfor a while and just starting to get
back into it. It was surprisingin that a lot of the side effects
that they were expecting me to havepost surgery I didn't have. And I
think that's a lot of it's becauseI'm younger than the average prostate surgery patient
number one and number two. Iwas really I trained for it, so
I was in really good shape goinginto it. So my recovery, albeit

(04:24):
the first month was terrible, justsitting on the couch for a month,
which would be hard for me.I've been able to bounce back pretty quickly,
and so I'm really grateful for that. We can't say that the prostate
cancer door has shut. I'll beback in one month and we'll confirm that.
But we're all pretty confident that theprostate cancer journey is winding its way

(04:44):
down, and we'll keep an eyeon things as you do with all the
cancers. But get that one outof the way, and then I can
focus on living life and stand inshape. If and when the lumfolma comes
back, I'm ready for it.Wow. Now not all of us can
or aspire to be an iron Mantriathlon. I'll say survivor of that too.

(05:05):
I have friends that run it andit sounds that are actually done it.
It's a biking, swimming and therunning it sounds absolutely grueling. What
are some things that you tell otherpatients or people like I'm thinking even with
autom mute and sometimes the fatigue isso bad it's all I can do to
go for a walk. You dohave tips on getting out there and staying

(05:27):
at it. I do, becauseyou know, I've been in that situation
too, way too many times whereI'm just too beat up from chemotherapy,
imnio therapy or surgery to be ableto do too much. And so on
those days when I really don't feelphysically able to do stuff, I'll go
sit outside in the sun. Icall vitamin D therapy. I get to
hear the birds. I get towatch the butterflies. We have a very
butterfly favorable backyard on purpose, soweird. It's like it's like a wildlife

(05:50):
show in our backyard. So Isit out there. I also ground myself.
I take my shoes off, Isit with my feet in the grass.
Sometimes I'll just sit on the grassand connect with nature that way.
I'll do debreathing the best I can. And so I'll do all those things
all days that I can't exercise.But I always try to push myself to
at least get out a little bit, no matter how tired I am,

(06:11):
and my doctors have encouraged me this. Sometimes I just have to try to
push through the fatigue, and thatmight be literally taking the dog five houses
down and turning around and come back. But that little bit really helps reset
my mind and for this show.One of the issues I continue to have
is the immune system, and Igo through ups and downs. My cancer
of lymphoma is of the immune system. So at its best, my immune

(06:32):
system is not great, and atits worst, which is going through the
chemotherapy, I have none. AndI've had to learn to adapt my life
in a way to try to avoidgetting sick. And my wife has been
a great gate keeper for people thatcome over and they go now, but
to make sure that they're healthy andsafe. It wasn't too many months ago

(06:57):
the electrician comes over. We livein a hundred year house. So electrician
comes over and I look at himand I can tell he's sick. So
I just walked out the back doorand said, my wife, you'll have
to handle him. We installed aRemy Halo system hospital quality air purification system
in our house, and I justhave to be really careful. Like today
when I was playing tennis, oneof the guys is a lot bill.
I am not well. I'm like, is it covid? Is it the

(07:17):
fluid? What is it? Hegoes, it's some sort of cold,
and so I made sure I stayedon the other side of the court from
him and washed my hands when Ifinished, and luckily it was very windy
today. Yeah, it's been it'sbeen interesting going on another direction, but
living is immune compromised person is.It continues to be challenging, but I
just adapt. I'm lucky. Ilive in Florida, so I can eat

(07:40):
most of my meals outside. Thatdoesn't mean I always do, but I
sure try to. My immune systemnow is at a base level, which
would be not terrible but not great, so I have a little bit more
latitude when I travel now, whichI am traveling on airplanes again. Finally,
it's masked and every times around people. If I go to a baseball

(08:03):
game with the Rays and it's inside, if it's crowded, usually isn't.
And when I go into the bathroom, I'll throw a mask on or whatever
just to be safe. So yeah, it's an interesting life I leave,
but it's become my normal. Andmy friends just know that and they just
deal with it, and if they'resick, they just don't come over.
It's fascinating. It's reminding them ofme during the time of COVID. And
now when I throw on the maskto go into a public restroom or something

(08:26):
like that, nobody gives me asecond look. But when I did create
COVID, it was everybody like backin a way, and who's this strange
person. In a way, I'mtrying to find a few silver linings of
that whole three year ongoing issue nowand majority of people are a little more
understanding of what it is to beimmune compromised. Yeah, it's it's been

(08:48):
a huge difference from even a yearinto the pandemic when people would ask you
why are you having a mask on? Right, or telling you that you
don't need it? And I think, now I agree with you. I
think most people accept that if somebodyhas a mask on, there's a reason
for it. And I don't getany sort of pushback or funny looks.
And I live here in Florida wherethere's a lot of old people, and

(09:09):
so you see a lot more masksin the grocery store here than you might
in a younger market. And itreally is accepted, and I think that's
the good news. And if we'regoing to eat somewhere and it looks like
it's going to be busy inside,my wife or daughter will say, hey,
go to the front and say,hey, he's immun a compromise.
Can we have a seat outside?And one hundred percent of the time they're
accommodating, there's no question. Sothey get it, so I think you're

(09:31):
right. It took a while awhile, and I was thinking about that
the other day when I had toget on a plane and I put my
mask on, and before there mighthave been a little pushback, but or
a little weird looks or finger pointing. It just uncomfortableness. Now is just
nobody gave it a second thought.Yeah, and I'm getting better at the

(09:52):
types of mask. It took meall this, It took me the whole
pandemic to figure this out. Butfrom other cancer patients that I talk to
because I talk to them often becauseof my book, is I've got two
different levels of mask. I've gotOkay, this is going on an airplane
at three M. Eighteen seventy plusmask is gonna basically give me almost complete

(10:13):
protection if I keep it on.And then I've got other levels of masks
that I use, depending on therisks that are more comfortable. But the
eighteen seventy plus, interestingly, whichagain I learned from a cancer patient,
you can wear it for six toeight hours and you can breathe fine.
It doesn't restrict your breathing, butit gives you great protection. So you
still get those dents on your face. It's the same ones they use in
the ICU of COVID patients, andso now those are accessible on Amazon.

(10:37):
They're not even expensive. So yeah, I always got I always have masks
with me. I got them inall the cars because you never know when
you're gonna have to go in somewherethat makes you uncomfortable. And now I
get even with my family They're like, are you Are you sure? Yes
or no? Now they know myradar is really good, and so far
I've been pretty fortunate in my decisions. It only takes one mistake. But
so far, so good, Sofar, so good. Now you mentioned

(11:01):
in passing your book. We talkedabout that last time we chatted. I
love the book is share the titleand everything. Let's just do some shame
on you goo Yeah. Up forthe Fight? How to advocate for yourself
as you battle cancer from a fivetime survivor, and the name up for
the Fight It came up. Itold this a little bit on my last
podcast, but when I woke upon September seventeenth, twenty twenty, from

(11:24):
surgery to remove a cancerous tumor belowmy right hip, which was my fourth
time with them, foma. Itwas pretty painful, and so when I
got that out, I woke up. I had an emotional breakdown in the
recovery room, which was happening duringthe pandemic. So I was by myself
with Gen the recovery room nurse,and a short, long story short,
it is a long story, butI told her that I wasn't up for

(11:45):
the fight, and this was afull fledged breakdown, full fledged, and
so she called the pastor in andwe reconnected with all the reasons why I
should fight and that I shouldn't giveup. It was quite the hour,
and so I did. I reconnectwith the reasons why I should fight and
not give up, which was tofight for my family, to fight for

(12:05):
my friends, to fight for mywork which was meaningful, and then to
fight to make God proud, whichwas which was really amazing insight from the
pastor, And so I was goodup for the fight. After about an
hour, hour and a half ofconversation and at the end of this whole
thing, where I thought we weredone, she leans in like this right

(12:28):
into my eyes and says, now, Bill, I want you to turn
your pain into purpose and write abook to help others and that's what happened,
and I was coming off of fetanyland morphine, so I had pretty
good reasons not to remember or notdo it. But at my house,
the pot's house, that deal isa deal. And honestly, I reached
out to a publisher and the CEOcalled me and said, we want to

(12:52):
do this book. We want todo a book like What to Expect when
You're Expecting, but for cancer patients. Because that book isn't out there,
they'd done their homework on it.And the impact of that book on my
life has been amazing because it gaveme purpose while I was going through it.
I wrote the book while I wasgoing through chemotherapy, and I wrote

(13:13):
it quickly because I wasn't sure Iwas going to survive and I wanted to
make sure I upheld my commitment tothe pastor and to the publisher to get
it done. So got it doneseven months before it even got published.
But the impact that surprised me.Sharon, we talked a little bit about
last time, but it gives peoplehope. I did not see that coming.

(13:35):
If I can beat it five times, if they're going through it for
the first or second time, thatgives them hope. And then also it's
the feedback I'm getting directly from patientsthat read it, and I do talk
with them all the time, isthat it's giving them advice that will either
change their journey, change their life, and in some cases save their life.
And what better purpose in life canthere be in that? So in

(13:58):
a million years, I never wouldhave guessed my life would go in this
direction, that cancer would have apositive in my life. But it's had
many positives, not just getting thebook out there and helping people, and
the book sales are actually going upin the second year versus going down.
I've been lucky enough to get somegood press, daily mail, good rix,
some pretty good international media on thisthing, and that's really kept it

(14:22):
going. And I think word ofmouth is really working on it because the
book works. And that's not fromme, of course, I wrote it.
I'd say it's a good book,but it's from the people that are
reading it that is making a difference, and all thanks to Pastor Tanya and
a couple of things that came outin that conversation that we just had listening
Bill is the power of purpose andthe power of community, and I find

(14:46):
that really part of why I dothe Autoimmune Hour two. As we had
spoken in our last interview, thereason I do the Autoimmune Hour is my
frustration with my care and being acommunication expert in my every day I was
like, if I have this muchproblem speaking and advocating for myself with the

(15:07):
medical professionals and others, what issomeone who doesn't have my training going through,
who are feeling crummy and feeling fatiguedand feeling too tired, not up
for the fight. And so tome, the two commonalities here are the
power of purpose in the power ofcommunity. I know you share other powers

(15:28):
within if you want to come inon purpose and community or dive into some
of the other things that you discoveredin sharing. Because I think the thing
about your book not only fope,but it also says you're not alone,
your feelings are valid, You'll beokay express your feelings. There was so

(15:48):
much in the book about sometimes whenyou start feeling why me, and seeing
that oh maybe an uncomfortable response,but it's perfectly normal. It's a sane
response. Yeah, it's true.The power of community. It makes such

(16:10):
a difference. Now interesting what Ihave learned now I do I'm lucky my
community reaches out to me from thebook because I'm easily accessible. Early on
in my journey, I was involvedwith some Facebook groups, particularly for cancer
patients, and I'm still one thatI actually is fantastics for immune to compromise
to people. But the cancer sidegot a little bit dark for me because

(16:32):
so many of the stories weren't havinghappy endings, and so much of the
information I was reading on the Facebookgroups has been inaccurate. But one of
the great communities that helped me somuch was one on Facebook for people that
are immune compromised, and so muchso that that group helped me get evuwsheld,
which the which is the drug thatis made for people that don't have

(16:57):
an immune system for to get yousome protection from COVID. It's not approved
anymore, there's a new one comingout. So when I went on that
Facebook group and I'm like, guys, I have no immune system, nobody
else in the group did either.I'm like, where do you think I
can get evyshelled? And somebody says, hey, they just got a shipment
at this little small hospital in oCalla, Florida, which is like a
two hour drive from me. AndI'm like, you're kidding. And so

(17:18):
I called the hospital and she goes, how did you find that we have
this drug? And I said fromthe Facebook group. She goes, Okay,
yes, we do have it.They had it in an abundance,
whereas nobody else had it. Andthat was going to be the difference for
me getting any sort of protection forCOVID because the vaccines just wouldn't work and
didn't work, and this was it'sconvalescent plasma donated by other people. So

(17:41):
I basically am getting protection from otherpeople's COVID and I so I go up
there, drive up there, andI call and I'm like, I'm not
coming in. I said, you'retreating the COVID patients right there. How
can I come in and get aCOVID the protection if I got to walk

(18:02):
through where there's COVID patients and they'relike, you're right, And so they
took me around another area, camein the back door, put a shield
on me. Of course, Ihad my mask on, sat in a
room, did my thing, andwent out the back door so I didn't
have to see anybody. But tothat group, that community was so helpful
for me and a lot of peoplein that group. Their purpose then became
helping people like me find this drug, and then that became my purpose.

(18:23):
So I did a couple of things. Number One, I'm on the horn
with all these cancer patients that I'mdealing with, saying, are they testing
your lymphocytes? They testing your immunesystem, particularly the lymphocytes because of the
COVID stuff and to being the Tcells, are they testing that? And
if your levels are low, becareful. I had a friend died that
was going through leukemia and he passedaway from COVID. He just didn't understand

(18:45):
how beat up his immune system was. And the cancer didn't kill him,
it was the COVID. And I'mlike, oh, that should be preventable.
So I'm calling everybody saying, maskup, be careful, get eavy,
shehled if you can. So thatcommunity helped give me some purpose as
well, and found it to besuper helpful. And now now my purpose,
which which has has good size andbad sides because of the book,

(19:07):
is the number of cancer patients thatI'm talking to and and it can be
a little draining. I had tocall yesterday, long call to somebody,
and I came downstairs with my wife'slike, how you doing. I'm like,
let's just not talk about it,but let me let me process it.
So it Yeah, it's a dualed short but then back to back
to some of the good things thathave happened for me being immun a compromise,

(19:29):
being an incurable cancer is that it'schanged my perspective on how to live.
And it's like facing having to facethe potential for dying. And I've
been close to a couple of times. Has really opened my eyes on how
to live. And we didn't talkabout that too much last time, but
it's it's I see, it's likethe colorblind person that puts on those glasses,

(19:55):
that puts on those glasses for thefirst time. I've seen those books
where they're that's that's how I see. It's like I put those on and
I see everything is in bright,vibrant colors, and I literally can hear
the joy it kids playing down downthe street. I hear the birds,
I see the butterflies, I feelthe wind in my face. I just

(20:19):
sense all that in a bigger waythan I did before. And it's been
so beautiful because I can be somuch happier just being living in the moment
versus worrying about the future. Like, for me, what's why worry about
it? Right? I just needto enjoy each day and live in the
present and live in the moment.And and it's been remarkable. I also

(20:44):
don't stress the small stuff so muchlike I used to. I'm like,
people are like people, somethings willhappen to me, and They'm like,
aren't you mad, And I'm like, no, that's a small thing.
So there's been some real bad befitsto having cancer. Might as well look
on the bright side, but itreally has changed how I live dramatically.

(21:06):
My diet finally to me getting cancerfive times and I fixed it, my
exercise routine. These are all thingsthat probably wouldn't be like they are.
I wasn't dealing with what I'm dealingwith on the cancer side. That's amazing.
Wow. Now as you're talking tosome of these people who are connecting

(21:27):
with you through the book and whatthey've learned about being resilient, and I
call it this real deep grit typeof attitude and outlook. And yet with
this really vulnerable side, it seemslike to me oftentimes trying to explain that
to people how resilience and grit andvulnerability actually are compatible, and people go,

(21:48):
oh, you're either one or theother. Yet Bill, you seem
to effortlessly embody all three of them. That's nice to say. I've got
a lot of practice, that's forsure. And yeah, I'm just grateful
and part of what talking to theseother cancer patients does make me really really

(22:08):
grateful. And to the point thatyou made earlier, it's really not a
fair playing field for the cancer patients. If you look at income levels,
if you look at race, youlook at some of these things, there's
some distinct disadvantages for some people andadvantages for others. I happen to be
educated and have good insurance. Iget it through the Affordable Care Act like

(22:30):
a lot of people, but it'sgood and I match that to Mayo to
make sure that I can get coveragethere. But it's not cheap. And
I feel bad for those people thathe don't know how to advocate for themselves
or b don't have the financial resourcesto be able to manage the journey like
I am. And it's kind ofheart wrenching to talk to some of these

(22:51):
patients that don't advocate for themselves untilmaybe it's too late, or don't get
a second opinion until the ship issailed. And I also deal with a
lot of patients that I just givethem kudos for how they own their journey.
But generally those are type A peoplethat you know that have been doing
that in other areas of their lifeanyway. But for the folks that don't

(23:12):
know to get a second opinion,or don't know how to ask for help,
or don't know how to look thingsup on the internet, or don't
understand what they're reading, it's it'stough. And when cancer rates are going
up, up, up up,and it's getting younger and younger and younger,
and it's a big concern, andwe spend so much time talking about

(23:36):
the drugs and the treatments and solittle time talking about prevention that it really,
honestly, it bothers me so much. If you just took exercise,
way, diet, smoking, andfix those four things, the cancer would
go down dramatically, and we're notdoing it. I think the thing is
twofold. First, I want tosay, I think you think it's never

(24:00):
going to happen to you. Icould internalize all of the different things and
tell someone gave me an autoimmune diagnosis. I never really paid that much attention
to it. Oh yeah, Iknow what that is. But there's always
a big butt there, but it'snot going to happen to me. Or
but I thought I was eating healthy, No I wasn't. I thought I

(24:21):
was exercising, yes, or itwasn't. Really with that commitment level that
we need to really be intentional aboutour life. And I think living in
the moment, as you said,is about an intentionality to our life instead
of a i'll get to it tomorrowtype of thing. I noticed a lot
of people always say yes, andthey might cognitively understand, but there's just

(24:45):
too many other things that they prioritizeinstead. Since your health is always with
you when you're young, especially,I never paid that much attention to what
it was to be like without health. Yeah. Yeah, same maturing process
for all of us as we gothrough it. It's interesting because I get

(25:06):
frustrated when I see somebody smoking,because I'm like, I've dealt with a
lot of lung cancer patients in myjourney, and I'm like, you do
not want to go through what they'regoing through, and thankfully smoking rates are
coming down. But then you lookat the vaping issues with the teenagers and
I'm like, just want to shakethem and say, do you know what
you're doing to your lungs? Youmight not know, but trust me,

(25:26):
you don't want to wind up atMD Anderson or Mayo or any of the
cancer centers because it isn't fun.I think the big thing when I talk
to people about auto im youwn andI would extrapolate out to cancer is when,
especially during the first period of timea you're in shock and then fear
takes over. It's almost a fearto move forward, to a fear to

(25:49):
try something different. It's interesting thatit becomes a freeze. Okay, I'm
here and I'm still breathing. Yeah, there's a fear. Okay, I'm
going to explore the different options.I'm going to talk to different people.
I'm going to reach out. Whatif someone thinks I'm weak or I know

(26:10):
that oftentimes I get calls from peoplewho are worried they're going to lose their
job because of their diagnosis. Andso there's all these things about fear that
keep us stuck from really seeking outa lot of help from As we said,
community, and other common things,even just reading a book. Sometimes
not your book. Your book's veryuplifting, but a lot of things I

(26:30):
was exposed to at the beginning werelike, oh my gosh, just reinforcing
all those scary statistics the doctors toldme. I want to be on the
high end of the winner side ofthe statistics, not all of the other,
and realizing that you're not your statistics. The numbers don't count. And

(26:52):
I've been asked this question and it'sunbelievable. But I'm sure you've heard the
question I've been asked, which is, what are your odds? Oh?
And I'm like everything I did donot to slap someone I know. And
I'm like, it's pretty easy.It's one hundred percent. And they're like,

(27:12):
I'm like, it's one hundred percent. I'm either one hundred percent alive
or a hundred percent dead. I'mnot. There's no odds, right,
So if it's one in a millionof survival and I'm the one and I'm
still one hundred percent alive, soyou gotta be kidding me. But the
fear thing for me was so realand still is real too. I Mean,
I'm getting sick because a lot ofyour listeners. They they'll relate,

(27:36):
but people don't understand or they don'tappreciate. I was going to a family
reunion and I'm like, guys,you don't understand. I'm going to drive
there, but I have got tobe protected and if you guys aren't feeling
well or whatever, I need toknow it so that you need to not
come. And the rule was brokenand we had to leave, and I'm
like, you just not and mywife don't be mad. They're just not

(27:56):
understanding that that if you get ifyou get COVID, your chance of living
is literally forty five percent. Sothey're just not getting it. And I
know it's still frustrating that people don'talways get it, that don't respect the
immune compromise a life that we haveto live, and it's better because of

(28:18):
the COVID awareness, but it's notwhere we need it to be. No,
it isn't. And although I wantto flip side that a little bit
because I learned something the other day. You know how in life, mentors
drop little nuggets and all of asudden, someone else will drop a nugget
and it all clicks and it allcomes together. This happened to me.
The other day, I was readinga post from a friend and they were

(28:41):
saying that if you're frustrated, it'susually an unmet expectation, and I'm like,
oh, that's wow. And thenit took me back, oh,
twenty years when a mentor of minesaid that anger is a secondary emotion.
You have to be hurt, frightened, and frustrated to get angry. And
I'm like, okay, so whatif if I'm hurt, frightened, and

(29:04):
frustrated, and if an unmet expectationis frustration, it would also be hurt
or frightened, right, Yeah,Okay, So now I'm thinking of another
mentor who told me I love thisand does all these pieces come together?
And this is over period years.Another mentor years ago told me about expectations.

(29:25):
Learn to make your expectations preferences.It may not help the situation,
but you'll feel more calm. Great. That's what I love about power of
community And like our friendship. Wejust met in January and I feel like
we're close friends now. And thistype of thing where you learn these little

(29:45):
nuggets from everybody and also put themtogether, you're able to build, you
know, stronger support for your entirecommunity, and that's what I love about
our chats and everything. So whereI'm going with this In those moments where
I'm upset, mine usually happens aroundholidays and usually around food because I do

(30:07):
have food allergies, and this onealways gets me. A little gluten won't
hurt, just like what of someonewho was allergic to bees? Oh,
a tiny beasting won't hurt. It'sreally, seriously, have you thought what
you're saying. It's always this balancebetween for me trying to give myself grace

(30:30):
and space and then on the otherside trying to give them grace and space
just for their ignorance about and theirluck that they've never had to experience what
somebody like you and I have togo through every day. Decisions every day
they don't even think are decisions.Oh yeah, I'm getting there. It's
work in progress. It's always thework. I maybe sound like I'm preaching

(30:53):
here, I'm not, guys,Oh yeah, work in progress. There
are times when my family wills nudgeme with an eailbow if they see the
frustration growing. It's yeah, it'sand by the way, back on to
food like buffets, I just won'tdo it. Yeah, I'm like,
I'm not doing a buffet. Idon't care where we are and how hungry

(31:15):
I am. And because I'm notafraid of the food, but I don't
want other people breathing on my food. That's funny about that, too,
is how uncomfortable everybody else is.I am fine going out with friends and
having a cup of tea and enjoyingthe community, the conversation and the time.
And yet I don't know how certainrestaurants are going to prepare my meal,

(31:38):
and many of them don't even knowwhat certain of my allergies are.
And I don't really care or takeit seriously, so I'm just I'm fine,
I'll just have a cup of tea. And yet my close friends are
cool with it. But it's funnywhen you get a larger group, how
people get so anxious to help youwhen they're not really helping you. If

(31:59):
they just left you alone with yourcup of tea, totally agree. Do
you have to carry it EpiPen?Yes? I do. I carried EpiPen
now, but it's for my dog. She's allergic to ants. She went
into antaphlexis a few weeks ago,and I literally carried her the vet seven
doors away thankfully from where we live, and ran her over there and they

(32:20):
took they saved her. But I'mlike, wow, I carry around an
EpiPen junior for my dog. ButI can't imagine what it's like to have
that issue as a person, toalways have that with you and not knowing
how they're preparing food and having reallyzero margin for a mistake. And a
lot of people with auto immune haveenvironmental allergies as well. Are to some
mold a mold filled store that youdidn't know? Wow, that's that's off

(32:44):
to you. Oh we all haverit things that we have to learn to
do. Right. Have you hadto use it? No, I've been
lucky. I haven't. They giveyou the tester kit all the time,
and I've practiced the tester kid afew times. I do know that it
would just take a huge amount ofcourage to do it. Though. Early
in my immune recovery, I hadto give myself shots and it would take

(33:09):
fifteen minutes to gather up the courageto like jumping in a cold swimming pool,
yeah exactly. Oh gosh, Ihave to do this one more time.
And I feel so for diabetics andothers that have to do that.
You can really begin to relate whenyou experience it yourself, and luckily for

(33:30):
me, I was able to movepast that phase of my recovery but have
a whole new understanding and sympathy forall the fear that comes up. Even
some people would call it irrational,I don't think it's irrational. I think
it's perfectly human to not want tostab yourself either with an Epipian, because

(33:51):
in an Epipian you're obviously working fromtime as of an absolute essence. Luckily
I haven't had to, but Ido love that they send that little test
with you. Also because I taughtsome of my family members how to do
it too. Oh smart, smartin case you can't do it, that's
smart. I think the power ofcommunity and things like your book we're talking

(34:14):
about your experience and so many otherthings you learned, as well as so
many of the other guests sharing theirtips and tricks and little things that they
found out along the way. Itdoes help come a little bit of the
fear of it all and not tobe able to live in fear. And
I've met many people with my experience, mostly around autoimmune who do have what

(34:36):
also stuck in low level fight flightor freeze. They're always in this sense
of alarm, and I feel thatthat could be possible with cancer patients as
well, to make sure the environment'ssafe more than we would prior to our
diagnosis. That's true. It's remarkablethe skills that we develop is imming to

(34:57):
compromise patients. I can walk intoa place, I can identify who's sick
in five seconds. It blows themind of my wife because she's like,
how do you know this. Wewere at a resort in Colorado and we
were eating our meals outside. Thisis in September, and so they were
aware of my issue and so theywere great. And so we were there

(35:20):
for five days and at the endof the five days, one of the
managers came over and goes, how'syour trip and did you feel comfortable.
I'm like, yeah, but youhad two really sick people that were here
while we were here, and hegoes, who, So I said that
guy? So I told him.He goes, You're totally right. We
had to call nine one one onthem, and he has somebody's had a
long infection or whatever. And I'mlike, okay, see who was number

(35:42):
two, and I told him andhe's like, how do you know that.
I'm like, I have to knowit so I can stay away from
them. I don't have a choice. I just know. And that brings
up this big part for me,because I can't tell you how many times
I knew my intuition was correct,either about something going on with my or
someone else, and to be ableto trust yourself, to advocate for yourself

(36:05):
and not let someone talk you outof it. Oh, you're being hysterical
or you're overthinking. I've heard allof those things, and you just know
it's true. It's real. Andeach time that I listened to that little
inner voice of mine, no,no. One time I had a medical
professional and came highly recommended, butfor whatever reason, I just didn't feel

(36:29):
right. I was like, no, I can't go through this process with
this particular professional. It just isn'tright. And just so many things didn't
add up in my mind. Andfinally it took me a while. This
wasn't instantaneous. Everybody allow yourself tospace and grace. I was seeing them,
and then all of a sudden,I just know I can't do this

(36:51):
anymore. There's absolutely something not right. And lo and behold. It was
ten days later I found the idealperson who could helped me with my condition.
I felt safe, I felt likeI was being heard. So trust
her little spidey sense. Everybody.I think it's really important. You may
not know why, because I stilldon't know what it was about that other

(37:13):
situation. I just knew every timeI was in that situation it wasn't right.
Yeah, good for you for recognizingand making a decision on it and
trusting that instinct. I wish i'dmade it sooner, Bill. I think
it lasted about five weeks or so, and I knew it the first week,
but I kept trying to talk myselfout of it. So that was
the big thing for me, asI learned trust myself when my spidy sense

(37:35):
says, hm mmm, something's notright. Okay, I may not know
what's not right, but move onbecause something better is out there. That's
interesting because it's there's a parallel tothat in how my life has changed because
of my health issues, which isthe things that I say no to and
say too confidently and volunteering. Iwas volunteering at a homeless shelter and then

(37:59):
get cancel again. I can nevergo back there, right because you talk
about high risk from catching something beinginside with people that unfortunately are the unhoused.
It's unfortunate that I can't do it, but to making decision to say
no to that, but saying yesto helping other cancer patients and saying no
to the committee where I don't havea real interest that I might have say
yes before, but focusing my timeon things that have a purpose or meaning

(38:23):
to me. It's the same ongiving a giving strategy, right, If
you're going to give money away,where do you want to give it?
And we have a plan on howwe want to spend our time, like
we have a plan for how wewant to donate money to causes. I
think I've learned how to say noa lot better yes, and I want
to encourage everybody. No it's nota dirty word. And if someone else

(38:44):
is not okay with your no,that's not your problem, that's their problem.
I also don't feel like I owean explanation. No, just no
exactly. I don't need to tellyou why, I know, just no.
It's been great because it's freed uptime from things I wasn't really happy
to do. And then you canspend time on stuff that has meanings.
Yeah, I agree with you.The power to say no is one the

(39:06):
one that I had to learn,but it's made a big difference. Yes,
and I like yours that where nois a complete sentence, will rationalize
or will maybe even make something up. I'm sorry my schedule doesn't allow it,
which just prolongs it because the nexttime they ask you, you have
to say no. Kid. Ohyeah, I got invited to a birthday

(39:28):
party next week and it's going tobe some costume party in some ballroom or
whatever. And I just said no, I can't make it. That'll be
good at that and yeah, andI felt good about it because people,
I don't need to give everybody anexplanation for why I do or don't do
things. I think that's true foralive life. I want to point out

(39:51):
that that's not just in our currentsituations of life. Wherever you are in
life, you don't need to makerationalizations or excuses for point. Yeah.
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(40:21):
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(41:07):
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If I could be you could beme just one hour, If we

(41:29):
could find a way to get insideeach other's mine, Welcome all in my
shoes. Walcome Mill and my shoes. Well before you abused, criticize and
ac cues, Welcome Mile in myshoes. I want to make sure that

(41:52):
we have time. Just anything thatyou would like to share that we haven't
shared. And what are You're asked, are you writing another book? That's
a great question, because I forsure have the content from it, and
so the content for another book isreally coming from all these other cancer patients
because I'm learning as I go,right, I'm learning from them as they're

(42:14):
learning from me. And it's beenremarkable, but probably not. And so
the reason no, first of all, is a tremendous amount of work.
And I think the current book isgood enough that and sales are going up
that there's no need to update itat this point. So maybe in the

(42:34):
future, yes, But this ishard stuff to write about and talk about,
and so I'm trying to Each timeI think I'm done with having all
the doing a podcast like this,or doing public speaking about my journey,
or writing an article about or doinga blog about it. Every time I
say no, I'm done because it'shard to talk about and I don't want

(42:59):
to be known as quote the cancerguy. I want to be known for
other things too. I'll hear froma patient and or I'll do a podcast
like this here from you, andI'm like, Okay, I should continue
to be doing this. So I'mthink I'm going to hold the line and
continue to do what I'm doing andpromote the book and deal with cancer patients.
I'm doing some consulting work in thehealthcare space, in particular for cancer

(43:21):
patients, so I want to tryto lean into that. I think I'm
trying to find I'm trying to findkind of my next big purpose and it's
probably going to be healthcare related orcancer related, but it hasn't showed itself
yet. But usually that's about thetime something shows up. I'm not wired
to play tennis all the time andwork out all the time and that be

(43:42):
fulfilling. That's just a part ofmy life. I really want to have
a life that is living with purpose, and so the book is allowing me
to do that, and my workis allowing me to do that. We'll
see where it goes. So Idon't know if anybody has any ideas,
reach out to me Bill at billspotsdot com. But it's clear that to
me, it's not about stuff.It's not a out money. The secret
sauce for me for happiness is helpingothers. And so how I do that,

(44:07):
I don't know, I was talkingto a big nonprofit that I was
going to do some work with,and the onboarding was so bad. Even
though this is a big, wellknown organization that I called them, I'm
like, this isn't going to work. I can't work at this badness level.
It's it's going to bring me down, not bring me up. So
finding those things to do, Idon't know, Sharon, I'm open to
ideas. Maybe this is one reasonfor the podcast. Somebody else suggests something

(44:30):
that absolutely because some of the thingsthat came to my mind when I asked
about the second book and he saidmaybe not. I'll tell you every time
I write a book, I closeit and then within a short period of
time, Oh, I wish Iadded that to the book, or I
wish I had led it back tothe book. So I love that you're
keeping the option as an option.Yeah, because you never know when Pastor

(44:53):
Tanya will call me and say,now you got to do another book.
So I guess i'd have to doit. I'm going to go through I
got my cancer will come back.And this drives my wife crazy because she
goes, why don't you say ifit's going to come back, I'm like
that's that's not how this one works. But we can feel good about it
and say that, but it will. And I think once I get through

(45:14):
number seven or eight or nine,they'll probably be another book in there.
You know, there should because it'llbe a whole new set of learning.
And by the way, things areadvancing pretty well in the cancer care world.
Honestly, some cancers are good,some are great, some are terrible.
On how the treatment's progressing, sothere's a lot of room to roam

(45:35):
on things getting better. I stillthink we really haven't hit the wheelhouse of
how to deal with it, andthe idea of getting chemotherapy just seems so
old school. And my chance ofsurviving each chemotherapy I went to was by
chance of dying during each chemotherapy wasthree percent. That was from the data.
And people don't particularly understand the seriousnessof chemotherapy and the side effects that

(46:00):
they create, some permanent, somenot. That there's going to be some
breakthroughs. They're working on it,and I'm involved with some of that too,
because I'm talking to all these peoplebecause of the book that I'm super
encouraged about the future have cancer care. I'm super encouraged about the plight of
the immune compromise because there's another drugalready about to be approved by the FDA

(46:20):
for COVID like it was for evushell. So I'm encouraged by all that,
but I'm also it can't go fastenough. And I say, the longer
I live, the longer I willlive. And if anybody's rooting for quick
advances in treatments, it's people withcancer or people like me with incurable cancer.
And if I can stay in remission, I thought it would be if

(46:43):
I could get three to five yearsthat there'd be enough advancements where it would
improve the math of my next roundof it probably going to need a little
bit more than that. So mygoal too, My number one goal is
to try to stay as healthy asI can. I'm ready when it comes
back, and I can hopefully throughall that delay at coming back, which
is a balance. Right. SoI'm not going to ever do another iron
Man race because that beats up theimmune system, doesn't strengthen it, right,

(47:07):
It's too much for the body.I'm not going to do a lot
of heavy cycling anymore because I haveissues that's not very comfortable. I'm going
to do running. Do running,but I won't do any more. I
won't do a marathon again because again, it beats up the immune system,
whereas a half marathon probably strengthens it. So changing everything on how I live,

(47:27):
but moderation and part of its agingtoo. But it seems to make
a lot more sense. It doesmake a lot of sense. And one
of the things I wanted to circleback on was the comments about how fast
certain medical advances are happening, andI noticed that in specific fields of the
autoimmune as well. I think cancertreatments on autoimmune treatments go somewhat hand in

(47:49):
hand. There's a lot of understandingof the immune system that plays both of
those big big time. Yeah,both of those therapies. Yeah. The
part that I still want to bringout from the autoimmune is the power of
friends, the power of community,the power of being okay with yourselves,
the power of loving yourself. Allof those things play into the healing process
too, especially the power of communityand people that are are such as yourself

(48:15):
willing, I'll say, a strangerwilling to take a phone call and listen
to someone who's really having a toughtime. That's the value of your podcast,
right is that community people don't feelalone, And yeah, cancer patients
or autoimmune patients should never feel alone. People like you right there. I'm
sure for me it was hard duringCOVID going through treatment because I didn't have

(48:38):
a lot of socialization face to face, almost none for two years. But
through things like this and in onlinecommunities it was in phone calls was really
helpful. There is a quick asideabout the face to face. I had
three medical professionals that I met duringthe time when everybody was wearing masks,
especially in medical situations, and Inever knew what they looked like below their

(49:01):
eyes. It was the most disarmingand enchanting time. The first time you
see someone's whole face. Oh mygosh. One was like, I didn't
think that's in my mind. Ididn't think that's what you know, your
nose and mouth would look like.Not in a bad way. It was
just like, somehow in my mindI had a different rest of their face.

(49:25):
I was hoping it was George.It wasn't. No, They're perfectly
beautiful, but it was just like, why did I have this different impression?
And I'm sure the same for mewith some medical provisions only seeing your
nose and then everything below your neck. It's kind of like, who is
this person? The connection of smile, the connection of all of those sorts

(49:46):
of things that we were missing out. So that for me really brought home
to continue to focus on building communityand knowing that there are others who can
understand what you're going going through.And for me, I found it was
really helpful just finding most of thetimes people don't have the answers, but

(50:07):
just I like to say, confirmmy sanity. Now, what you're going
through. Your fear is perfectly normal. What you're going through, the vulnerability
is that's normal. People do that, and it's nice to have someone else
confirm your sanity from time to time. Yeah, and it helps. And
I've promised this blog to write itfor some healthcare company, but I haven't

(50:27):
written it yet because I'm having ahard time writing it. But is the
impact of loneliness your health to diagnosisand how it can get pretty lonely at
to this point when I told mywife I'm thinking about writing this article,
and she goes, what do youmean lonely, I'm like, it's lonely,
lonely having an autoimmune disease sometimes andit's for sure only being a cancer

(50:49):
patient. I don't know how particularlyit is in the world of the autoimmune
piece, but in the cancer world, a lot of people disappear when you're
diagnosed with cancer. And for me, obviously being largely alone outside of my
wife and dog for a long time, it's lonely. It's lonely that people
don't seem to understand what you're goingthrough. You feel like you're on your

(51:13):
own. And the online communities werehelpful to a point, but the face
to face the difference maker for meis as socialization, and it's pretty lonely
for a while. And I haveto deal with loneliness when you're going through
a health issue. I don't knowthe answer, which is probably right.
I haven't written that blog yet.A couple of things came to mind.

(51:36):
Bill. What I found fascinating waseven within your family, you can feel
lonely because there maybe they're trying tocheer you up or who knows, but
they're just unmet expectations, regrets,all sorts of things can come up.
Some fears from the other parties.Oh, I'm afraid to I went out

(51:57):
shopping today. Maybe I should beclose to you for the next twenty four
hours or whatever it is. Itcan be an incredibly lonely and vulnerable time
if they haven't walked in your shoes. It's really fascinating to me that people
don't understand the amount of how lonelyit can feel when they don't understand why
you can't have that cupcake. Forsure. We're just about at a time

(52:22):
share where to get the book andany final thoughts. It's so good to
catch up with you, Bill,and bravo for you made it through number
six and you're looking good. AndI was so thrilled that you were out
playing tennis. Oh my gosh,thank you. Yeah, it was I'm
lucky. I'm super lucky and supergrateful and I'm so glad that you reach
back out to me. That meansa lot. And just having this conversation

(52:45):
with you is it makes my dayand I really appreciate you. Oh,
thank you, Bill. I justfell in love when we had our first
meetings in our conversation. So,where where does everybody get the book that
we've been teasing everybody with? Wherecan they find? Oh? Yeah,
anway anywhere books are sold Amazon,Barnes Andnoble Target dot com. But obviously

(53:06):
most people are buying their books onAmazon, and I got a lot of
reviews on there. And if youdon't need it for yourself and hopefully your
listeners never need to buy it.But most of us know a friend or
family that's been through it, orgoing through it, or will go through
it. It's a good book asa gift. I'm finding that so many
of these books are being provided asgifts to cancer patients. And it's written
easy to read, it's not superlong, it's meant to take notes in

(53:29):
it. It's got checklists things likethat. It's one hundred percent going to
be helpful for anybody going through thecancer journey, and even those friends and
family of those going through the journey. There's a chapter written by my family
the coach, to the families thecancer patients had had to go through it
too. Yeah, I'm grateful forthis opportunity to talk about it with you.
And it's billspods dot com as yourwebsite if they want to find out.

(53:53):
Yeah. Yeah, a lot ofpictures on there. You can see
my family and my sweet little dogPippa. It's adorable. Everyone, have
a great week. Whatever your adventures, and join me next week for another
brand new episode. And thank youso much, Bill, and we'll check
in later and see how you're continuingto do because I always love your insights.

(54:16):
Ah, thank you, appreciate it. See you next week. The
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media, is for educational purposes only. What you read here and see on
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(54:37):
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