Betsy’s Healthful Journey™ through Stage IV Cholangiocarcinoma

*Betsy's Healthful Journey™ through Stage IV Cholangiocarcinoma

*Betsy's Healthful Journey™ with Cholangiocarcinoma

Join us for an interview with Betand discover how he has been able to manage through her journey after diagnosis with Stage IV cholangiocarcinoma. This is Betsy’s Healthful Story™. Please note that the video may only play in landscape mode on a mobile phone.

Diagnosis

Treatment

Lifestyle

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

4:48 When did you first think that something might have been wrong that you wanted to seek attention for? You know spring of 2020 as the world was you know deep deep into this pandemic we thought would only last a couple of months. I first started having a little bit of lower back pain and I’ve never had any back problems and you know my friends would all kind of tease me like welcome to your 30s and that’s just the way it is and I think my primary doctor might have said well we’d expect that you know during the pandemic people are more sedentary and sitting and yeah just you know back pain nobody thinks anything of it but then it got a lot more serious when one day in July I woke up with double vision and it was pretty pronounced and it wouldn’t go away

5:52 After two days, I eventually called the nurse hotline and I went over my symptoms with her and she very calmly but kind of urgently said okay get a responsible adult to drive you to the emergency room right away so you know I’ve read you know it could be something like a tumor or an

aneurysm

6:51 I was like the only patient in that wing of the hospital but I was pretty calm and they did a brain CT scan and they came back to me and they said we found something and those are the words I’ll never forget hearing we found something,,, some kind of mass… they decided to set me up with a neurosurgeon and send me home

8:33 It felt a lot like I pulled a muscle or something in my lower back like – by chronic do you mean constant it was just always always there… So a few weeks of consistent not severe but concerning back pain

Diagnosis

9:47 So I wouldn’t say the weight loss was unintentional but yeah it was certainly enough that a lot of people noticed and commented on it and you know some even you know thought it was too much weight but I was happy. I felt confident I felt like I looked good you know this was yeah how much weight had you lost over what period of time maybe 25 or 30 pounds over six months so not a huge amount

14:06 I was like okay let’s get this tumor out and I’ll go on with my life and kind of look back on this as just a weird road bump that that happened when I was 34. So they scheduled the surgery a month from the date it was discovered. I think it was found on July 13th the surgery was going to be August 13th but before the surgery they had to do what they called a balloon test. I was awake and they had me they had me like talking and seeing the likelihood of a stroke because I’d have a stroke if the alternative either I’d do fine without the carotid artery or I’d have a stroke because they were testing that you know threat level and i remember hearing them say before I went into the room the tumor had grown

"The rug's been pulled out from under you and this has happened and what else is going to happen and you you're almost looking over your shoulder and I hadn't worked for a while and I felt like I had been in that cycle and getting back out there transitioning to working and not being all about appointments I gotta get here and do this"

Betsy

15:23 I heard someone say it doubled in size over the that four-week period so right away then I knew okay this probably is something bigger than we thought but I’m starting to panic but I still was fairly calm but I remember going in this room and you know you’re awake and there’s probably I don’t know maybe 15 medical professionals in this room all talking to me and doing different things and it’s really this complex like just high level experience and they were pressing the artery and talking to me and right away I was slurring my words and in a lot of pain and you know I could like trying to say my name and stuff I was really struggling and really slurring and so what they learned from that whole process is that they can’t you know take out my carotid artery when they’re in there they have to be really careful because I was in the population I would probably have a stroke if they if they nicked it or something so they brought me back and they said you know it’s really good we did this it lets us know what we can and can’t do in surgery so just look at it as that way it was really productive and so the next day was the surgery. I went in my dad was there for a little bit but dropped me off this is still during covet time so no visitors and then a lot of strict protocols there I knew I was going to be in the hospital for five days for recovery following the surgery so then yeah they put me under. I was under for eight hours it was an eight hour surgery. I woke up and you know it’s so weird when you go under because the world goes on and things continue but for you it’s just a blink of an eye and eight hours of come by and I wake up and I’m in the ICU for the first for the first couple nights and it’s really nice room and a really nice nurse and I feel really well taken care of they decided they wanted to do a full body CT scan right then just to see if there was inflammation anywhere else in my body so right after the surgery you know right when I was waking up we went and I did the full body CT scan and brought me back to the ICU

18:08 And the surgeon said yeah we found something in your back and your liver so at this time I’m learning I have three tumors in my body because then I learned they did they didn’t resect all of the brain tumor they got, I don’t even know if they got half of it um but they treated the procedure as really positive because they got enough to biopsy and you know I did really well so you know I don’t know how much of it was them like spinning it to just make me feel better but they were like yeah it went really great we’re really happy with things but I’m learning okay there’s other masses and at the time i have no idea what this means I mean there hasn’t really been any cancer in my family. I just don’t know anything about cancer at this time so they take me down then to another room to recover this was before cancer so you have roommate. I’ve learned since that in the hospital every time. I’ve gotten I get my own room being immunocompromised with cancer

20:55 So I remember my last surgeon the radiologist came out and he said a great news your genomic testing has come back and we think we know what it is so the genomic testing is when they send the tumor tissue out to see what kind of mutations the tumor has it’s kind of a it’s kind of a newer process but it’s really really important you know this will determine what targeted therapies would work for me and whatnot and that’s ultimately how they diagnosed me

Medicine moving Quickly, Chemo the First Choice

21:28 Based on the mutations they found plus the aggressive presentation and I remember the radiologist said I don’t know if he said cholangiocarcinoma or not I think he did and I think it was one they had a theory of like five different cancers and that was like number five and I think it was the one with the most grim statistics and I just started crying and I said I wanted thyroid cancer because that’s one that’s often more treatable and that was when they were theorizing and I am so mad at him. I said why couldn’t you have told me this after the radiation because I have to go into this little machine with my head clamped down now thinking about this and knowing the grim statistics you know Google is often you know it exaggerates or it’s old data or anything but when you google cholangiocarcinoma the five-year survival rate is two percent if it’s spread it’s one year and I’m like I’m 34 years old at the time and I’m just crying and I’m so mad at this radiologist and so essentially that’s how I learned what I had yeah and that was hard and I was so angry at the time and so I went home and I was going to the U of M, University of Minnesota for treatments and they didn’t know which oncologist to set me up with because you know it’s such a rare cancer they didn’t have you know an oncologist dedicated to that but they found one for me he’s brand new he was just hired i may have been his first patient he was a GI oncologist and he gave me a call to talk me through it I really have a great relationship with this oncologist now and in the beginning and you can tell we’ve both learned a lot over the past year and a half but in the beginning you know he called me and we’re on the phone and he’s throwing you know all the medical basically another language to me but he’s trying to make me feel better he’s saying you have this mutation so it might be three years for you but I’m hoping five but hopefully there’ll be medical advancements that’ll give you more time and so yeah that actually did calm me down a lot and that kind of built the foundation of my attitude toward this disease

24:03 Ithink it’s really important to just have someone else’s eyes on it plus my Minneapolis oncologist like I said he was so new I wanted someone at the Mayo Clinic who was really really experienced and I did get like a veteran in cholangiocarcinoma. He was a very nice older man and he looked over my file and imaging and they actually pointed out that my spine had fractured at this time I didn’t know yeah in Minneapolis they were saying it was an impending spinal fracture at Mayo they pulled up the imaging and said no look it’s fractured so my back pain was I guess validated by then I’m pretty shocked it didn’t hurt more than it did at the time but so the plan in Minneapolis was to get me in for back surgery to not only ablate that tumor but also fix the broken spine with I think it’s clinoplasty is the term with medicinal cement so I don’t want to switch gears too much but I was on the phone with that neurosurgeon they switched me to a different neurosurgeon and she explained normally they’d do like screws for this kind of procedure but she said she didn’t think I had a lot of years so I was talking to the new neurologist could be working on my spine she said normally they’d do screws to reinforce the spine but they didn’t know how many years I had left and if it was worth it to do that invasive of a procedure we decided on the medicinal cement which is often just more temporary and less invasive so that was happening kind of parallel to me going to the Mayo Clinic for my second opinion and at the Mayo Clinic this oncologist I really liked him and his fellow um they really really applauded the care I’d been getting in Minneapolis um they said especially that balloon test I’d mentioned earlier to check out my carotid artery they were like that tells us like really what incredible care you’re getting there they’re really careful and really smart and they said they would do the exact same treatment protocol that was lined up for me so I kind of had the option of you know continue going in Minneapolis and then have the Mayo Clinic on hand if I needed them or wanted their opinion and that oncologist unfortunately he retired shortly after that appointment but he said one thing that I’ve held on to a really long time he said he said our goal is going to be to keep the cancer under control until we can one day cure the incurable so I’ve really held on to that you know

26:32 It’s other people have associated cholangiocarcinoma with whack-a-mole you get one tumor down another one might pop up and you play that game which is essentially the game I’ve been playing for the past year and a half and fortunately winning so I had the spinal surgery after I got back from Mayo

Brain metastasis and FOLFOX Chemo

30:16 I was really going into it you know still ready for battle if you will but certainly concerned I do remember my oncologist called me the day before I started infusions to say we should have talked about fertility because I’m a young adult and normally they’d have someone in my role maybe freeze their eggs or something ahead of time but you know I hadn’t thought of that and he apologized for not saying it sooner but he said we really need to go forward with treatment and your stage four and typically you know we don’t we don’t do that process with stage four patients anyway so that that hit me really hard. I think that’s just kind of when it really sunk in what was happening and how much my life was going to be impacted I kept thinking like I was so angry to be diagnosed and stubborn and I kept thinking I’m not going to go down like this and I’m gonna fight this and I’m gonna get back to normalcy. I’m gonna do these aggressive treatments and maybe a year from now I’ll be back at my advertising job maybe pregnant maybe just you know on the path and benign so that was really one of those crucial moments that it hit and it hit hard and it let me know what was going on and that things weren’t going to be the same again so that’s that was just a key moment for me

31:45 In the Fall of 2020 and remember this all started first with the brain tumor in July and the diagnosis in August and the back surgery and we’re finally we had an early snowfall that year so it wasn’t that long waiting until between. It was October it was the first snow of this season and at my cancer clinic the infusion center is really nice and we kind of have our own sweets and I had a window suite and so I got to watch the first snowfall on campus and now I’ve gone to school at the University of Minnesota so it’s this kind of full circle and a familiar place and the recliners are comfortable and they’ve been this great my oncologist main assistant are medical secretary we’ve been on the phone back and forth now for a few months like I’m not going to say daily but often like I felt like we knew each other you know he talked about when my back surgery finally got scheduled they were jumping up and down and dancing and like you know we’d kind of grown this connection and I finally got to meet him in person. His name’s Mike. He did the chemo 101 your first visit and just go through everything and overall it wasn’t nearly as bad as I expected it to be. I went home and still I felt pretty good. I had very little side effects and the protocol was two weeks on one week off and it went well. I did that through the Fall. I didn’t need all the all the Gatorade and Ensure I stacked in my shelves

33:10 I wasn’t really losing my hair. So I did that through the Fall and right before New Year’s it was December 29th I had scans that showed I was stable and my primary tumor had shrunk a lot so that was really exciting and then okay I felt confident I’m winning this and then so now I’ve gotten to the point where I started talking about what are we gonna do with this primary tumor. You know when you’re stage four immediately you’re inoperable. I didn’t want to believe that. I wanted to get there so I wanted to get all my metastases under control and so far the brain tumor was my spinal meds were my memory does get a little blurry at this phase but what happened was I decided to go back to the mayo clinic to get their thoughts and what they were going to do with what they would do with my primary tumor you know with the resection or radiation or ablation or I wanted their opinion and that oncologist I really liked had retired so they sent me with someone new and she read my scans and said you know I think something’s wrong the chemo’s not working the cancer is progressing which is mortifying and I was so angry at my oncologist and I called him and he called me back right away and we realized that no she was wrong she’d been comparing the wrong scans

34:29 But it looks like the chemo is keeping you stable. I said okay, so what would you do for my primary tumor and she said we wouldn’t do anything for your primary tumor because it’s already spread she said I’m really sorry it’s too late for you it’s going to keep spreading and I was furious because I didn’t want to believe this and the it’s not the path I’d set out to go on. Even that first Mayo doctor had said we’ll get the cancer under control until we can cure the incurable. She said either it’s going to keep growing elsewhere and other organs or my primary tumor those were kind of the only two outcomes what I kind of wrote that off and went back although this is where it gets blurry it comes to fruition that there were two tiny lesions in my pelvis that needed to be treated so I wasn’t necessarily stable anymore it did move to my pelvis so we switched me to a different chemo that’s more aggressive we treated those two tumors with high-dose radiation and I kept going with this new chemo that you know I still tolerated it pretty well I just was tired more than anything. The new chemo was FOLFOX. It’s one where you bring the chemo pump home with you. You wear this you know not so stylish fanny pack in over 46 hours it infuses and that’s every other week

38:44 In 2021 and you don’t know how well it goes until like three months after I started having a lot of abdominal pain about a month following this and I needed to be hospitalized and we did a nerve block and that really helped but ultimately we get through I get through all the side effects and now its January or February and we look at the scans and we see that dead tissue has now replaced the tumor the tumor is gone so we’re thrilled

39:14 I don’t think we can say definitively it’s dead without a biopsy but it looks pretty dead and the radiologist is very thrilled and confident so we’re going to keep watching it but it looks like may have killed the primary tumor as well. Incredible that’s great so yeah that is a lot of talking but that kind of brings us up to today. All the tumors have been treated admittedly so my oncologist wants to keep the cancer at bay now so he wants to keep me on my chemotherapy which I struggle with but it did drop the oxaliplatin from the FOLFOX combination over the summer because my neuropathy is really bad and treatments have been a lot easier since then. So far things are still looking good and stable so i plan to continue doing that but I mean our big picture plan is to hold on until something really game changing comes along and I can get off the chemo and there’s something curative that is just really effective and game changing and you know the way medicine is advancing so quickly I can see that happening

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

41:24 Talking with a nurse you know we came to the realization I can’t feel my feet and that’s why I’m falling and so that’s kind of when we decided okay you’re young enough that if we drop the oxaliplatin now you know the neuropathy might not be permanent so it’s been about six months now. I still have it but it’s I think it’s getting better. I did do a little bit of acupuncture and they say that that can help with neuropathy it might have yeah I can see it clearing up but it’ll like my eye

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

46:05 I stopped driving when my double vision appeared and I gave up my car so for a while I was getting rides to all my appointments from my brother and a friend and eventually my brother and his wife had a baby and now I use Uber and Lyft a lot to go to and from chemo appointments and you know I was just thinking this morning about what would I have done 10 years ago because I get everything delivered. My groceries you know like target products everything’s delivered and then I do Lyft and Uber and otherwise you know Doordash too for meals or whatever you know

47:14 I’ve always been the type where I’ve struggled to ask for help I really prefer to be self-sufficient and I found myself in a position where I need to ask for help so I’m learning how to do that especially like for rides or you know I’m finding there’s such a strong young adults with cancer community online I’ve connected with and a lot of things will kind of gripe about or vent about is people offer like let me know if there’s anything I can do for you which is great but it’s such a like kind of empty offer and you know so kind of learning how to how to say like awesome, I could really use a ride to the pharmacy tomorrow is swallowing my pride and taking people up on these offers whether they not whether they know or not I’m going to as far as earlier we were talking about navigating the system. I have to spend a lot of time on the phone and communicating between different parties and it blows my mind

48:55 I’m at this age in my life where all my friends and peers are having babies and I feel like everyone’s having a baby right now which is another reminder to me of what I’m missing kind of watching from the sidelines. I mentioned I’m 35 and I was diagnosed at 34. I still thought you know a family was ahead of for me and that’s been really really hard seeing other people’s life go forward as mine’s just paused and it takes a lot of their time which I understand and I’m really happy for them but I think it has been harder maybe to have that that level of support that might be there otherwise

55:17 Not just my friends but a lot of people are like, “I don’t know what I’d do in your situation. I’d fall apart I couldn’t do it but I truly really think like nobody knows how they react in a situation until they’re in it. I would say the same thing to someone else before I was in this situation like I think people are stronger than they give themselves credit and when you’re forced to be you don’t really have a choice. You’ll do it. So yeah, I think in general people shouldn’t sell themselves short and assume they’d fall apart right away because there’s no way to know until you’re actually facing that situation

57:46 If Atticus and Bumby could talk, what would they say? I think they’d say I think they see me as mom because I took them home when they were tiny little little babies and they’d say, “Mom, you’re really damn strong and we’re with you till the end and we’re gonna cuddle with you and comfort you as much as we can but we’re always very happy when you get home from your trips and we love when you give us wet food. Where will you go next? I know you’re traveling lately – where will you go next? Puerto Rico Next Week

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