Jenni Dyrdahl survived lung cancer | Stage IV metastatic adenocarcinoma | immunotherapy | PDL-1+

DESCRIPTION

Unlike many on a cancer journey, it took Jenni Dyrdahl was taken on a lengthy, circuitous, painful ordeal before she was correctly diagnosed with Stage IV metastatic adenocarcinoma, a form of lung cancer.  It began when she felt acute pain in her leg and her hair started to fall out.  Doctors put her on physical therapy, then mental therapy, then was prescribed narcotics and told she should be fine.  During subsequent visits, she was brushed off as a “drug seeker,” as she was crying in pain.  Incredibly, it wasn’t until she was hospitalized with a broken hip, did doctors discover she had an advanced form of lung cancer.

For Jenni Dyrdahl of Fairbault, Minnesota, her cancer journey began in the summer of 2017 when she felt acute pain in her right leg.  The pain would not go away and her hair began to fall out.  She made ten trips to emergency rooms as she could barely walk, but by way of treatment, the best she could get was prescribed narcotics.  Eventually, she received x-rays and an MRI, and was told she had pain in her back.  Jenni insisted the pain was in her leg, and she needed for it to be treated.  Multiple health care professionals said there was nothing wrong with her, and that she showed up in their office seeking drugs.  Jenni was reduced to tears because of the pain and the depression that came with nobody listening to her.

Her problems were compounded when an argument with her now former husband resulted in his throwing her in their garage.  Jenni was taken to the hospital with a broken hip.  She ended up going to the emergency department an eleventh time.  At first, the doctor was not going to give her any pain medication, but an x-ray showed she had a broken hip.  Then and only then did she something prescribed for her pain, but doctors also said she needed to be taken to a hospital.  Things didn’t get any better for Jenni when she was taken to a hospital without a trauma unit.  She was transferred to a second hospital, where further tests showed that in addition to a broken hip, she had an advanced form of lung cancer!

Because she was diagnosed PDL-1+, she was able to undergo immunotherapy and avoid chemotherapy.  Jenni started out with chemotherapy, but she became so sick, she insisted only on immunotherapy, a switch to which her doctor agreed.  She went on Keytruda, which she said was so much better than chemotherapy.  Her Stage IV metastatic adenocarcinoma comes back every 21 days because it is incurable, but Jenni is happy the Keytruda has kept her alive.  It makes her joints ache and her mouth sore, but those problems pale in comparison to what she went through with chemotherapy.

Post-treatment, Jenni’s life is different.  She has a tough time walking upstairs, if it is humid outside, she cannot stay outside for long, and she says some days, she gets sick for no reason. 

Going forward, Jenni Dyrdahl says she hopes more people will be able to get screened for lung cancer because without early detection, it is very difficult for one diagnosed to achieve survivorship.  She also urges you to get your home tested for radon, as radon can be a cause of lung cancer.

Additional Resources:

Support Group:

A Breath of Hope Lung Foundation  https://www.abreathofhope.org

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton, and on this segment, we will be hearing from Jenni Dyrdahl of Fairbault, Minnesota, here along with husband, Jaye.  Jenni went through a difficult lung cancer journey, a journey that was tragically made more difficult than it really needed to be, something we will explore in this episode.  Now before we get started, we want to remind you that on Cancer Interviews, we don’t provide medical advice.  If you need medical advice, please consult a licensed health care professional.  So, now let’s get started with Jenni Dyrdahl, and Jenni, welcome to Cancer Interviews.

Jenni Dyrdahl: Thank you.

BM: Jenni, your cancer journey sadly began long before you were diagnosed, and we want to get to that phase, but first describe your life before those steps.

JD: I had a normal life.  I am a mom, I had four girls who I was raising.  I tried to live a very healthy life and tried to raise my children in a healthy way.  I myself am a dental hygienist, so I was very conscious of trying to teach people a healthy lifestyle and live one, too.  I tried to exercise regularly, yoga, exercise at the gym, tried to do some running, tried to always improve my daily lifestyle.

BM: Jenni, before we go any farther, we’d like to get to know bit more about you.  Are you originally from Minnesota?

JD: Originally from Illinois, but raised my children in Minnesota, so a lot of years in Minnesota.

BM: Now for those of us who are not from Minnesota, we all know about the Twin Cities, but where is Fairbault, with respect to the Twin Cities?

JD: Fairbault is about an hour south of the Twin Cities, and that’s kind of an important thing to know about, where lung cancer is concerned.  In the Midwest, you want to know about lung cancer.  You don’t have to be a smoker to get lung cancer.  There’s a thing called radon, which is quite prevalent in the Midwest.  It’s not proven that radon is why I got lung cancer, but a lot of people who do get lung cancer can get it from radon, which is something in our soil, and comes up into our homes.  That said, it is very important to get your home tested for radon, if you live in Minnesota, if you live in the Midwest.

BM: One program note before we continue.  If you find what you hear on this episode to be helpful, we invite you to please subscribe to our podcast and our YouTube page on the links below.  There you will find a bell icon.  If you click on that, then we will notify you anytime a new episode is posted.  To get back with Jenni Dyrdahl, the radon piece, was this something that you checked on, because you can get this tested, as you said.

JD: I was unaware.  I didn’t even know it existed, but luckily after I became sick, I was introduced to a program called A Breath of Hope, and they made me aware of radon, and how harmful it is, and I eventually moved out of the home I was living in, and kind of lived in an area of Fairbault, Minnesota, with a high level of radon.  I wrote a letter to the people who moved into my old house.  I don’t even know who they are, and just gave them a headsup, and told them what happened to me, and to please get your home tested.  I encourage anybody to get their basement tested, and you can get a free testing kit from your public health nursing department.  It’s a three-day testing system, you hang it in your basement, you send it in, and they send you the result as to the radon level.

BM: So, Jenni, it might have been because of radon, then again, maybe not, but when did you reach a point in which you felt something is not quite right?

JD: I was on a trip to Illinois.  I was driving the entire way, which is about seven hours.  This was in the summer of 2017.  I was in really heavy downtown Chicago traffic, and my right leg just started really hurting.  Then I got home to Minnesota, and the pain never went away.  But I kept up my routine with my kids and my work, because you have to push through the pain.  On another note, I was having a difficult time with my ex-husband.  I was kinda mentally depressed, too, so I started counseling, as well.  I was telling the counselor and my medical doctor that I was having this physical pain, but I was also having this mental pain, as I was trying to push through it all, because I was trying to tough it out and I am a very strong person.  I have been through a lot in my life, and so I thought I could get through this.  Then my doctor is telling me I can get through this.  She said I am young, and I am healthy, you’re fine.  But months passed, and this was just getting worse.  So, I kept going to my doctor, and I told her this is getting worse and that I am not fine.  And again, she said I was fine.  On a side note, two years earlier I was going to the doctor because I was always tired and not feeling well, and that’s not like me.  I eat great and I take care of my skin, and I take care of my health, I take care of my teeth, I mean, I take care of everything.  But now my hair is falling out.  So, I am not fine, and I have been telling these doctors I am not fine for a year.  Yet everyone is telling me I am fine.  Then two years later, I had this terrible pain in my leg.  So, my doctor told me to go to physical therapy.  I did everything the PT told me to do.  I kept eating better, I went to mental therapy.  I was on a lot of medications that supposedly alleviated the pain.  I finally was on narcotics that they gave me, but I couldn’t take narcotics during the day because I am a licensed health care professional, and you can’t do that, so I would suffer through the pain all day long, and then go home, take a narcotic to get some sleep because I was in such pain.  Finally, I ended up going to emergency rooms because I was in such pain, I could hardly even walk.  The first few times they would give me a shot of a pain narcotic, then they would tell me I was fine.  Then I would go back to my regular doctor, and the same thing would happen, and she would send me up to the Twin Cities because we have nothing in our small town.  They would perform an x-ray on my back and give me a shot in my back and do an MRI of my back.  They kept on telling me I was okay.  I had sciatica in my leg, and they said if they found pain in my back, they would find it in my leg.  I told them the pain is not in my back.  It’s my leg.  But they told me I didn’t know what I was talking about, and “We’re the professionals.  We’ll give some shots in the back, and it will help you.”  I told them this is not helping me, and I am not a complainer.  Eventually I could not exercise anymore.  I was in complete depression, and I thought I was a hypochondriac, because everyone’s telling me I am fine, and by now I have gone to the emergency room like ten times, and they think I am a “drug seeker”, so nobody would give me any more narcotics or help because I was seeking drugs, apparently in my small town.  One time, the physician’s assistant was so mean to me, she looked me in the face and said, “I am not doing anything for you.  There is nothing you need.  You’re fine,” and she was so mean to me, I was bawling, crying, and she said in order to walk, I needed to get myself a cane.  She said, “I will do an MRI, but I will tell you right now, there’s nothing that is going to be on it.”  And she was right, because there was nothing wrong with my back.  This was like two or three weeks before I found out I had cancer.  I never write letters, but I wrote a letter to the hospital, and told them that physician’s assistant was so mean.  Meanwhile, my nurse practitioner would not prescribe any narcotics for me, she thought I was a drug seeker.  So, at a time in which I had Stage 4 lung cancer, I could not get narcotics anymore, no pain medication.  I was only told I could go to physical therapy.  They thought I was a crazy hypochondriac.  Meanwhile, I was in a domestic abuse relationship also, and I was completely depressed and not knowing what to do, and I was still trying to go work as a dental hygienist because I was told I was “fine”.  I was just not knowing what to do, and so it was the day before Thanksgiving, my husband got very, very angry.  My daughter had come home, and he wanted to go to the gym with her.  She didn’t want to go.  Meanwhile, I had just gotten home from the chiropractor, and was in my room eating, because I didn’t want to be around him.  She got home, and he started yelling at her.  I told him he was not going to yell at her, so I got up as best as I could to stop that.  Luckily, she just left the house, but then he just went crazy, tearing up the house and physically abusing me, took my phone so I could not call the police, and ended throwing me in the garage and I ended up fracturing my hip.  Somebody in the neighborhood called 9-1-1.  I was taken to the emergency room and again, they treated me like a drug seeker that night.

BM: Jenni, I have to ask.  How difficult was it, because here you were, someone who was taking care of yourself in terms of diet and exercise, somebody who wouldn’t choose to use strong medications or drugs, and here you were in a position in which you almost had to depend on them.  How difficult was that?

JD: All I could do was take one or two narcotics at night, as I could take them during the day.  So, I was living on Advil, which did nothing for the pain during the day, as I tried to work and take care of my patients.  Then I would go home and take the prescription drugs, so I could at least try to sleep.  So, I never got addicted to it, but I would ration the pills I did have because I knew my doctor wouldn’t give me the amount I needed.  So, it was weird. 

BM: In addition to that, there’s drug/medication piece, but there is also the uncertainty piece.  You know you needed to do something, but the health care professionals you were dealing with, it seemed, were really reducing your options.  So how difficult was the uncertainty of knowing you needed to do something, but you weren’t getting much guidance from the people who should be giving it to you?

JD: It was a nightmare, and I am a very direct person.  If there was a right way to get myself help, there is no way, I wouldn’t have gotten it.  I should have been screened years before, when I was telling them I was losing my hair, I would hardly stay awake, I have a good diet, I exercise.  I mean, I had a baby when I was 16.  Don’t tell me stress is the cause of losing my hair.  My daughter is a great human being.  She is successful.  She has a bachelor’s degree, she’s happily married, that baby I had when I was 16.  Don’t tell me stress is causing me to lose my hair.  I have prospered.  I am a successful, intelligent woman.  I can deal with stress.  I know how to deal with stress.  I should have been screened a long time ago.  Like every other person that gets screened for anything else.  There’s no screening for lung cancer, unless you are over 55 and smoke two packs of cigarettes a day.

BM: Now let’s pick up the story from where you were taken to the emergency department for an eleventh time.

JD: The police officer is holding my hand, trying to comfort me, and again, the physician is telling me he is not going to give me any drugs.  Instead, he was going to give me a Xanax to calm me down, but I wasn’t going to get any pain medication because he said I just needed to calm down.  Meanwhile, here I was with a broken hip.  So luckily, they took an x-ray and then, they said I needed pain medication, you have a broken hip, and we need to get you outta here.  Then I learned I had been sent to a hospital without a trauma unit, so I ended up getting transferred twice, this during a holiday week, so it was an absolute nightmare as to how they treated me.  So, I finally got the right hospital, but I had to lay there with a broken hip for three days with a broken hip because they found it was cancer, so I had to work with an orthopedist and an oncologist, and they had to coordinate their treatment of me.  That meant after arriving the night before Thanksgiving, I couldn’t have surgery done until November 30.  Then I had to stay in the hospital, because they had to determine where the cancer originated, how long I had had it, etc.

BM: And with all else you had going on, just how much of a shock to the system was it when you were told, on top of everything else, that now you have cancer?

JD: This was just awful, and I was so embarrassed.  I had just gotten my hip broken by my husband, and I didn’t really reach out to anybody.  I am a strong woman, I held my head up high, I didn’t know my ex had a drinking problem.  I just don’t walk around talking about my problems, and I have always been strong for my children, so it just leaked out, and when it did, I had an overflowing amount of support from friends and family.  So, then I found out I had cancer, then I was told it was Stage 4 lung cancer that was incurable, and it was just too late.  They couldn’t do surgery because of where it was.  They said it was in my lungs, but they had to get a biopsy and do DNA testing, they just knew it was bad.  They fixed the hip, and they couldn’t keep me in the hospital for anything more, they tried day after day after the PET scan, but they had to send me home.  Thank God I was so healthy before cancer, because I have literally thrived because of people’s prayers, and my positive attitude, I think.  I’ve been fortunate.

BM: When it comes to lung cancer, do you have many treatment options, or is it pretty much cut and dried as to what needs to be done?

JD: I was PDL-1 positive to like 99 percent, so I was blessed.  And I got immunotherapy.  I was only supposed to live eight months after they found out I had lung cancer, but because I responded so well to my immunotherapy, I have now been given three years.  They first started me on immunotherapy and chemotherapy.  The chemo made me so sick that I told my oncologist that I was only going to do the immunotherapy, so he agreed to do just the immunotherapy.  And it has worked out for me.

BM: You had mentioned chemotherapy, and what was the other remedy?

JD: Keytruda.

BM: And that was less invasive?  Less painful?

JD: It’s so much better than chemotherapy.  I do the Keytruda once every 21 days, and only don’t feel good for about five days afterward.  It’s kept me alive.  It’s amazing. 

BM: For somebody who hasn’t gone through this, somebody who is watching right now, who has just been diagnosed with lung cancer, how would you describe that therapy?

JD: It’s not a big deal.  I go in, and it takes about four or five hours.  I have a port just below my neck, and I would get the port, for sure.  It’s no fun being poked in your arms.  If you know you are going to have this for years, I would have them place a port in your body.  They take your blood through the port.  You only get poked one time.  Then you sit and wait for your bloodwork to come back.  You meet with your oncologist and discuss your health.  Mine is usually very good.  My thyroid and my liver react to the Keytruda once in a while, because it attacks your healthy organs, as well as your unhealthy parts.  Your cancer grows back every 21 days because it’s incurable, but the Keytruda allows your own immune system to kill the cancer, so that in my case, I don’t need chemotherapy anymore.  It’s kept me alive, but it also makes me tired.  It makes my joints ache and it makes my mouth very sore, which is nothing compared to chemotherapy.  It’s such a blessing.

BM: Our guest is Jenni Dyrdahl of Fairbault, Minnesota.  She is with us along with her husband, Jaye, and Jaye, I just want to talk to you about the caregiving effort for Jenni, because Jeni has already expressed that she had a tremendous amount of support from numerous places.  From your corner, just what is caregiving like?

Jaye Dyrdahl: She tries to do the best she can, but I try to pick up what she can’t do around the house.  We have decided that she is not going to go into work anymore because dental hygiene poses a high risk of contagion.  We’re keepin’ her home and we’re keepin’ her safe.  I try to do what I can, to be her rock.  I came into the picture after her abuse.  We have known each other since 1993.  That’s when we dated, and we’d been friends ever since.  Then she called me shortly after her diagnosis, and we were hangin’ out together, fell in love and we got married.

BM: That’s a wonderful story.  It sounds like you have almost been her doctor at home, but there is an emotional side to the caregiving.  What has that been like?

JYD: The emotional side?  It started out when the immunotherapy was like two days when she would have a rough time after her treatment, and now it’s up to five days that she has a rough time.  So, I try to do what I have to, to take care of her those days.  Her quality of life is really good, considering what she has to go through.  So, she might have five bad days and then, two-plus good weeks where she can do pretty much what she wants.

BM: Now in terms of caregiving support, Jenni, you’d mentioned that support came from a number of places.  How about the foundation, A Breath of Hope?  What has it done for you?

Jenni Dyrdahl: They’re amazing.  They are always giving great advice.  If you need it, they will help with transportation.  It’s just the research, they’re constantly researching.  If the Keytruda stopped tomorrow, without Breath of Hope, where is my next line of therapy going to be?  They realize that lung cancer is the deadliest form of cancer out there, and they are just helping the world know, helping to take that shame away, and even if you do smoke and have lung cancer, you shouldn’t be shamed for that, but the majority of we lung cancer survivors don’t smoke, yet we got lung cancer.  You have to get that stigma taken away.  They are trying to get the world to know that because the stigma is attached to it, so a lot of the doctors come out of school and don’t want to practice in that area because there are not a lot of dollars going toward lung cancer because of that.  So, Breath of Hope is raising money, fundraising to get that research for people like me.  They are there in so many avenues.

BM: Jenni, Jaye had said your quality of life is pretty good, but these days, is there anything you could have done years ago that you cannot do now?

JD: So much.  I cannot hardly walk upstairs.  If it is humid outside, I cannot stay out for long.  I get sick for no reason, I mean, it’s a different world.  I don’t try to complain, but I mean, there is just a lot that is not the way it used to be.  I try not dwell on that kind of stuff.  I just try to be grateful.  I try to volunteer as much as I can.  I try to be the best mom and grandma I can possibly be.  I just have so much to be grateful for.  I have wonderful friends and family.  That I am still alive is just amazing.  I didn’t do much research on cancer.  I wound up at Hennepin County (Minnesota) Medical Center for a reason.  On that ambulance ride, when they said you could go to any hospital you want for your treatment.  I said no, God put me at Hennepin County Medical Center.  We are going there.  You can do the research if you want, but just know your cancer is unique.  If I would have put adenocarcinoma in the Internet, that would not have been good, because there is not a real good outcome, yet here I am, a few years later.  You know, there are friends at Breath of Hope who have passed away, so I know how lucky I am.  You can’t be totally in denial about your disease.

BM: I ask you about something I learned from you and from others who have suffered from lung cancer, and it seems far more prevalent than it should be.  That is the lack of early detection, the lack of testing.  Do you think there will ever come a time when things will improve in this area?

JD: That’s one thing A Breath of Hope is trying to improve is that there needs to be better testing, and it is why I am so grateful for them.  There is a person I know through A Breath of Hope who is in hospice, and she is younger than me.  A bill will be introduced in the Minnesota Legislature to increase testing for people 44 and under.  Every other type of cancer you can get a screening.  For example, Jaye went in for a screening for skin cancer, and it was very easy to get.

BM: Well, as a prostate cancer survivor, I can tell you getting tested for prostate cancer is as easy as pie.  It’s a matter of bloodwork, and early detection made my cancer journey blissfully uneventful, but that would not have happened without early detection, so my heart goes out to you, or anybody, who is unable to get the information they need when they need it.

JD: For me, it would have made a lot of difference in my life and a lot of others.

BM: So, before we go, I want you to put yourself in the shoes of somebody who has a private audience with you, somebody who has been diagnosed with lung cancer or thinks they might be diagnosed with lung cancer.  Based on your experience, is there any takeaway, any overarching point you’d like to make to this individual?

JD: You don’t need to be embarrassed.  So many people want to help you, and it might be hard to accept that, but go ahead and accept that help.  If you were in their shoes, you would want to help somebody else.  I would not google a bunch of stuff on the Internet.  Most people are very smart people and the more you learn about something, the more you may think you have it and maybe you will make yourself sick that way, versus if you just keep a positive attitude and stay hopeful, maybe you will just stay a bit more healthy that way.  Just listen to your doctor, eat as well as you can, stay as active as you can, you can do it.

BM: Jenni, thanks so much and that’s going to wrap it up for this segment of Cancer Interviews.  We want to thank Jenni Dyrdahl and her husband, Jaye, of Fairbault, Minnesota for a story that we hope you will find will be informative or inspirational, or both, and we hope it drives home the point that in your cancer journey, you are not alone.  So, until next time, we’ll see you on down the road.

Support Group…

A Breath of Hope Lung Foundation

https://www.abreathofhope.org

SHOW NOTES

TITLE: Jenni Dyrdahl, Stage IV Metastatic Adenocarcinoma Survivor – Fairbault, Minnesota, USA

Jenni Dyrdahl is a lung cancer survivor but will always believe her journey was far tougher than it should have been.

She initially experienced pain in various parts of her body and suffered hair loss, but doctors repeatedly said nothing was wrong with her.  Jenni also unsuccessfully sought a screening for lung cancer.  Only after she suffered a broken hip, the result of domestic abuse and subsequent hospitalization was she discovered to have lung cancer, but by then, her Metastatic Adenocarcinoma was diagnosed Stage IV.

Thanks to immunotherapy, Jenni has survived but has many physical limitations.  She has trouble climbing stairs, she has numerous aches and pains, and if it is humid, she cannot stay outdoors for any length of time.

Although it is not easy, Jenni advises anyone who wants one to aggressively seek a lung cancer screening.

Additional Resources:

A Breath of Hope Lung Foundation

https://www.abreathofhope.org

Time Stamps:

05:46 When Jenni felt something wasn’t quite right.

07:20 Detected numerous health problems, but she was seen by health care professionals, she was told nothing was wrong.

12:46 When she had Stage IV Lung Cancer, but had not yet been diagnosed, she had trouble getting prescriptions for the necessary amount of medication.

15:05 Jenni said she was under-medicated, having to take Advil by day and rationing her medication at night.

16:20 Should have been screened for lung cancer years earlier.

17:33 Describes going to the ER with a broken hip, when she already had Stage IV Metastatic Adenocarcinoma, but did not yet know it.

27:52 The lung cancer foundation, A Breath of Hope.

29:08 Post-treatment, Jenni describes her limitations.

KEYWORDS (tags):

lung cancer

immunotherapy

cancer interviews

PDL-1+

chemotherapy

adonal carcinoma

jenni dyrdahl

stage four metastatic adenocarcinoma