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Michelle's Story
Special | 27m 17sVideo has Closed Captions
Chronicling one woman's arduous pancreatic cancer battle.
An AZPM original documentary chronicling the arduous pancreatic cancer battle of Michelle Kirlew and highlights her experience as she and her family, friends, nurses and doctors navigate her illness.
Michelle's Story is a local public television program presented by AZPM
This program is brought to you through the support of AZPM donors. Donate and start streaming with AZPM Passport now or make a gift in honor of this show.
![Michelle's Story](https://image.pbs.org/contentchannels/8xZwGZg-white-logo-41-lb80YwB.png?format=webp&resize=200x)
Michelle's Story
Special | 27m 17sVideo has Closed Captions
An AZPM original documentary chronicling the arduous pancreatic cancer battle of Michelle Kirlew and highlights her experience as she and her family, friends, nurses and doctors navigate her illness.
How to Watch Michelle's Story
Michelle's Story is available to stream on pbs.org and the free PBS App, available on iPhone, Apple TV, Android TV, Android smartphones, Amazon Fire TV, Amazon Fire Tablet, Roku, Samsung Smart TV, and Vizio.
This program was made possible by funding from Desert Program Partners, local viewers committed to local programming.
Common, but often unseen, cancer strikes nearly one in every 10 adults.
If it hasn’t happened already, it’s likely that someone you know will get cancer-a neighbor, coworker, a family member or you.
Cancer patients face countless tests, grueling treatments, emotional highs and lows, worry and occasional joy.
This usually happens out of sight and out of mind in doctor’s offices, clinics and homes.
Most people have no clue what this journey is like.
Michelle Kirlew and her family want to change that-to reveal what happens behind those closed curtains and doors.
We both were married prior so Trevor was Michael’s and Maddie was mine.
We’ve been very open and honest with them and I don’t want them to ever think that I lied to them and since we don’t know the outcome, we’ve never done this before, I hope I get it right.
So we’ve tried honesty.
We’ve toned it down.
We don’t talk numbers or percentages with them but they all know that most likely that this cancer is going to kill mommy but we’ve never lied to them about it or the fact that it can...we just don’t talk about the numbers.
When pancreatic cancer spreads beyond the pancreas and enters the liver, the prognosis at that point is really...the goal of treatment is palliation meaning eventually this cancer will take her life.
Most people live with cancer of the pancreas when it spreads months to a year to two years.
Michelle is enrolled in a clinical trial and receives her chemotherapy treatments at the University of Arizona Cancer Center in Tucson, Arizona.
She was diagnosed with pancreatic cancer in December of 2013.
Trevor, their oldest child, lives with his mother in Texas while Madison and MacKenzie live at home.
We didn’t have a choice.
Like we weren’t given an option.
We were given cancer and the kids weren’t given an option and I don’t know if that’s fair or not but I didn’t give them an option either because I am...I’m going to remission and I didn’t allow for them to think otherwise.
I think about how to teach my children I think to cope with grief but without making them grieve early.
I don’t want them mad.
Like in all of this I’ve not felt mad and I just don’t think there’s room for that.
I just don’t want them to think that I quit and I think that’s the most important thing is that I just won’t quit.
You hear people say that she beat cancer or they beat cancer but then you think, ’You beat it but you died.
Like how did you beat it?’ and it’s like, you beat it by the way you live.
You didn’t...
I told Michelle, I said, ’If this was me, I’d have crawled into a corner somewhere,’ and she hasn’t.
She stood up and said, ’Okay, let’s do this.
Let’s dance.’ And then she went out and she danced and then she went on a hike and she took her kids here and she did... She hasn’t changed and she’s beating it.
For nearly 10 months Michelle’s experimental chemotherapy seems to be working.
However, right before Christmas, as she neared the anniversary of her diagnosis, blood tests show a sudden, worrisome spike in her cancer markers.
I’m a bit frustrated thinking it’s a year later and I feel like I’m in the same place.
So you’re kind of celebrating that you’ve lived a year longer and at the same token I’m like, ’Okay, well, the second year we have to do more or we have to fight harder or different or something like that.’ Free hugs.
All day long?
Hmm mm.
Yep?
I think it’s been hard on the family and I feel bad.
Like even coming up to like the holidays or what have you.
It would have been way cooler if we got like maybe diagnosed during tax season.
So what I really want is I want my children to understand the whole meaning of Christmas and it’s not the gift it’s the giving and it’s the giving of yourself.
But I want them to have that and that’s what I have been blessed with in the last year.
If you remember prior to November Michelle’s cancer, pancreatic cancer, had spread to the liver.
She was on chemotherapy which was initially working.
The lesions in the liver disappeared consistent with a fantastic response.
Unfortunately what happened was the cancer in the pancreas started to grow which indicated the treatments were no longer working.
So we needed to change the treatment.
Because the growth of the cancer was focused in the pancreas we decided to change the treatment primarily focused on delivering treatment straight to the pancreas.
So the therapy we went with was radiation.
I think I was getting frustrated about being stable, that 42 stable’s not going to be good for me.
Remission is what’s going to give me a longer life.
Chemotherapy will give me a great opportunity to have plenty of time to explain to my children as I’m going to die but the remission will give me an opportunity to spend a life with them.
It’s not that I don’t cry about it and don’t get sad or upset but I don’t want to live there and I’m living.
Today is our first day back after radiation and so we’re going to meet with Steve and Dr. Elquza.
Hopefully if my blood work is good then I’ll start chemo today.
If not, it might just be fluids if I can get them and then next week we’ll start chemo.
Dr. Elquza.
Good to see you.
How have you been?
I’ve been great.
I hear...I hear the pain is much better from Steve.
Really to me the...probably the thing that indicates that we’re on the right track is the pain getting less so I’m happy about that.
The rest of your blood tests look fantastic.
Michael, did you want me to make you a sausage sandwich or something?
I left one out.
In May, after 16 months of living with pancreatic cancer, Michelle’s scans and blood tests show her closer to remission than ever.
Test results show her tumor markers are even below what is normal for a healthy person.
I think it’s been fun and I know this probably sounds crazy but you’re sounded by love and I’ve had just a lovely...a lovely time.
I’ve made some wonderful people.
I’ve had the opportunity to really grab hold of my marriage and my relationship with my children and to celebrate the most important things and learn what the most important things are.
I’m jealous of old people.
I really am.
There was this man getting out of a car and he was walking so slow and boy I was jealous ’cause he just had his whole life.
I’ve always known that Michael is fantastic and the kids are wonderful and I’ve always known that my friends were just unbelievable.
To have everybody be marvelous and loving all at once, it has...there’s so much joy in my life...just everything.
The flowers are prettier and the birds are more brilliant and everything.
You get to... You want to soak up as much of every memory as you can.
So I went to the ER and I am internally bleeding from an ulcer up in my duodenum.
It’s really like out of the blue.
Like the terminal part of this disease I didn’t...I didn’t think that I would take a long time to die which is weird and I really don’t.
But at the same token I thought I would have like, ’Okay, well, there’s...chemo’s not working so hospice,’ and you would have time to put all your affairs in order or at least...even the time for your body to naturally break down and pass away.
And if they can’t control the bleeding or if my body doesn’t start...stop it, it won’t be dying slowly.
But it won’t...it won’t be on I guess my terms.
At the end of the day, cancer, what it is is a growth of cells.
In all our bodies we have cells that serve vital functions to our body.
What cancer is is there’s unregulated growth.
Those cells just don’t want to die and what ultimately happens as these cells grow, they connect with one another, they form tumors, they form masses and it’s really these masses growing into other vital functions of your body that ultimately leads to death.
So...and pancreatic cancer is very strategically placed.
Where it’s located, it’s located around vital blood vessels, it’s located next to the liver, located next to the intestines and so as that tumor grows, inevitably what it could do is invade into blood vessels, spread to the liver, cause liver failure and cause death that way.
So when those things happen, and they happen often quickly, it really...you’re faced with a challenge that’s sometime too great to overcome.
Though sent home a few days later, Michelle is back within a week for more surgery.
Again, her life is in imminent danger.
Today’s operation will include, among other things, the Whipple procedure, the most common surgery for pancreatic cancer patients.
Dr. Gee is...he’s very assured.
Like he...
When he came back yesterday he’s like, ’If we’re going to do it, let’s just do it now.’ And it’s funny ’cause that’s how Michael and I got married.
We were, ’Let’s get married.’ So it kind of made sense and at the same token I was a little frightened by the push.
Like Wednesday seemed like a decent day to have surgery and then, ’But Saturday sounds like a good day too.’ And so I think I’m okay.
And the faster the better.
The tumor markers are down and I’m bleeding so they’ll find it and they can get it all.
So maybe it’s a blessing in disguise.
Are you playing X-box?
No, I’m just watching the fire.
Okay.
I was thinking about you.
How you doing?
I’m doing good.
Good.
Are you ready for your surgery?
Yeah, I’m ready.
I love you, mommy.
I love you too.
And I’ll be thinking about you the whole time, okay?
Okay.
Do you want to talk to Maddie?
Yeah, I’d love to talk to Maddie.
Hello.
Hi.
Good morning.
Did Mac just wake you up?
Oh, maybe.
Yeah.
Maybe.
He called to say hello and wish me luck and then he asked if I wanted to talk to you.
I love you and I can’t wait to see you later on today, okay?
Okay.
So she was doing really well.
They were talking about taking her breathing tube out yesterday.
They took out her...the IV line in her neck that they did dialysis on her on Saturday and Sunday and now yesterday she tried to rip out her breathing tube and in doing so she ripped out one of her IV lines.
And so they sedated her with some pain medicine and liquid Ativan, IV Ativan and right now she’s got very minor swelling on her brain so we’re just delayed a little bit.
We’ll be all right.
We’re just...
Instead of breathing tubes coming out today it’ll have to come out tomorrow or the next day.
I was actually doing really well until this morning and then when they did the scans on her brain this morning and they saw the swelling, it was kind of an issue for me but I’m doing all right.
Once she’s out of the ICU, probably an additional 10 to 14 days in the hospital and then I’m not really sure if they’re going to do some sort of recovery center or if they’re going to send her home.
There’s been talk of both but we’ve got to get to there first.
She’s still got...she’s still got a pretty uphill battle right now, especially with the setback that we had this morning.
But at least probably another two weeks.
Two weeks turns into six before Michelle can be released from rehabilitation but she’s going home tomorrow.
The surgery removed all her visible tumors and blood tests show normal cancer markers.
It’s like...I tell everyone, I’m like, ’It was like a Hail, Mary and they caught the ball.’ And so that’s like the exhilaration of, I’m like, ’Oh, my god.
I was dying and I’m alive,’ and it’s just...I’m in awe and I feel truly...like it’s a miracle and I feel blessed.
Dr. Gee, her surgeon, basically told her she would die in a couple days if they didn’t do this surgery so she was about 24 to 48 hours out from dying.
Technically I’m cancer free.
But he said he got all the boundaries, an all clean, so technically I’m cancer free.
Now it gives me time to stay cancer free and it also gives me time to build my strength so that I can fight again.
So it’s really awesome.
Looking at the numbers I didn’t think she would ever get there.
I’m thrilled.
The thought of...the thought of spending the next 50 years with this woman is just...just makes it all worthwhile.
The last 10 have been a joy, I can’t expect the next 50 to be anything but amazing.
After eight weeks recovering at home the family prepares for next week’s Thanksgiving dinner.
Since the surgery, Michelle now has diabetes and receives insulin shots.
Her tumor markers have risen alarmingly.
I wake up high as a kite every day ’cause I’m alive and I’m very excited about that.
And the kids are...I get to kiss them goodbye to school and they smile when they come in the door and everything is good.
So it’s...
I think the reality of the disease has definitely left an impression but I have not given up.
I haven’t changed my mind about how to live my life in spite of maybe having a shorter life.
That’s still all it is.
My antigen 19-9 went up about 1100 points so it’s...there’s a good possibility the cancer’s returned.
I went for an MRI and a CAT scan so we’ll get the results tomorrow to find out if there’s anything growing.
There’s options.
I don’t know exactly what all of them are but I’m very assured that the tumor board, Dr. Elquza and Dr. Cunningham and Dr. Gee, I am sure as they have saved my life several times in the last few months and gave me the longevity of life for the last two years that they will help me come up with something that will give me more.
In the meantime, this is the journey we’re on, this is the gift we’re given and I’m still, what, three months?
I’m still winning.
Hi.
How are you?
I’m doing great.
Doctor, this is my mom.
Her mom, Shelly.
I met you... Yeah, we met in the hospital.
Yes, at the hospital.
Nice to see you.
Nice to see you.
The last time we met, afterwards we did blood tests that day when you left, Michelle, and to our surprise the cancer marker came back and that’s the CE 19-9 level and it was very high.
It was up to approximately 1,000 and that level’s supposed to be 38 and less in our lab.
So that was concerning, well, that the cancer might have...might return...might have returned.
So we did an MRI scan and with the MRI scan what we’re seeing is we’re seeing a lot of the aftermath of surgery.
If you remember, during the surgery, the blood supply to the liver was cut off and so what we’re seeing in the liver is a lot of inflammation from the surgery, there’s parts of the liver that’s still not receiving a lot of blood.
Because of those changes, it’s really, really hard to tell in the liver if there’s cancer or not honestly.
So the good news is there’s nothing obvious on that scan, okay?
But the bad news is I don’t have enough information really to tell you guys to explain why that blood test is high.
So we’ll review it this Friday, we may get a PET scan to confirm that we’re cancer free and like I said, if there’s any evidence that the cancer has come back, we can go back to that chemotherapy since it worked so well in the past.
Okay?
Okay.
Okay, so we just got out of the doctor’s office with Dr. Elquza, all right?
They did not find anything.
The scans are inconclusive.
They don’t see anything there but as of today, it’s fabulous news.
Yes, it’s awesome news.
When you’re dealing with cancer as a patient, unfortunately cancer doesn’t let up.
Even when you think you’re in remission, there’s always that thought that it can come back and certainly pancreatic cancer of all the cancers has the highest chance of it coming back.
So from a provider end, there’s nothing more frustrating than when the patient’s looking you in the eye and asking you, ’Is the cancer gone?’ and you don’t have the studies to reliably answer that question, quite honestly.
And so all you can do is be honest with the patient and tell them, ’As best we can tell, we don’t see anything but yeah, this rising cancer marker is very concerning.’ That’s all you can do until we hopefully develop better tests, better methods.
Two and a half months later Michelle returns to the hospital.
The cancer is back with a vengeance in her liver and lymph nodes.
She and Michael have been told her cancer is terminal.
Any future treatment will only be an attempt to prolong Michelle’s life.
It was disappointing but it wasn’t a surprise ’cause it was almost like a guarantee.
I have found the last couple weeks...I have watched myself become more of a burden on the family.
Like I’ve watched their stress and the demand I have on them and the inability to do things myself and I think the reality that this is going to happen sooner than later has hit home for us and we’re not in denial of the time but I really think we just didn’t pay attention to it.
We were busy having fun and living our life that now we’re like, ’Oh, well, it’s time.
We need to be serious about this.’ So we’ve gone and called around and made funeral arrangements.
I’ve talked to my family about what my wishes are.
Not everyone agrees with them.
So them having thoughts and opinions and strong ones, I have them too.
But I explained to them and I’m like, ’You will never question my husband again.
Like, you need to stop this because he’s in charge.
If he says to paint me blue with my ass up in the air, I will be buried that way because we have discussed it and that’s what we’ve agreed upon or that’s what him and the kids have discussed and therefore that’s the way it’ll be.’ It’s hard to grasp that the end is coming for her.
The last couple months for me have been the traditional televised version of what you see of cancer.
No sleeping, nausea, vomiting and up until now these last few months, Michelle was never like that.
She lived her life.
She did what she wanted to do.
If she wanted to go somewhere, she went somewhere.
If she wanted to do something, she did something.
And it’s just been rough the last few months for her.
If you look at the prognosis of Michelle’s cancer, she rocked it.
She killed it.
And it just speaks to the type of person she is and her family.
They took it head on.
She’s a fighter amongst fighters.
Her involvement in the clinical trial I think really...Michelle thought that that would be her contribution.
That’s the gift that’s going to go way beyond Michelle both to science and both to future patients that are diagnosed.
So it’s kind of cool.
I will not maybe...I’m not going to get the cure but I’m going to be a part of it.
How awesome is that?
I don’t even know how to be disappointed.
I don’t know how to be less than grateful and I have accepted my path and I think I always have.
Like I...I don’t know.
I’m curious.
I think I’m a little afraid.
I think that...I think God promises us so much that I really...I’m not like scared to death, you know what I mean?
Like I think when...I just don’t think the time is here yet but when the time comes, I’ll be ready.
I’m ready now.
I really don’t think this is a curse, I think it’s a blessing and I have something to learn on this journey.
I’m not exactly sure what it is but I’m open to learning it but this has been awesome.
I don’t know how to explain that ’cause I know it doesn’t sound like it’s really awesome but it...I...the people who I have...my life has only gotten better and so no matter how long or what we do or what have you, like I plan to fight as hard as I...
I promised my kids, ’I will fight and I will fight every day until I cannot fight and that’s what I can promise you.
I can’t promise you how long I’ll live but I can promise you every day I’ll fight,’ and they help and they’re your champions.
It’s just...it’s the coolest thing.
♪ music ♪ This program was made possible by funding from Desert Program Partners, local views committed to to local programming.
Michelle's Story is a local public television program presented by AZPM
This program is brought to you through the support of AZPM donors. Donate and start streaming with AZPM Passport now or make a gift in honor of this show.