Ray’s Journey with MS

*Ray's Healthful Journey™ through MS

*Ray's Healthful Journey™ with Multiple Sclerosis

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

Diagnosis

Treatment

Lifestyle

Navigate Ray’s Journey with MS

00:09 As much as you share you never know what thing that you share will hit a nerve with someone and give someone that motivation to explore an avenue that might be helpful for them

00:24 My name is Ray and I’m originally from California but I’ve lived in Colorado, Illinois, Ohio and now the great state of New York

00:34 I work in healthcare finance so I have a lot more hands-on approach than most people in terms of understanding the billing process and insurance and the potential pitfalls that in many cases result in people having missed treatment or the opportunity to get treatment is something that they lose out on because they don’t know that they can afford it or they don’t know what options are available or their insurance simply won’t pay for certain things unless the right hoops are jumped through

01:24 I received my diagnosis in 2019

01:34 I was at a baseball game that was out in the heat a little and towards the end of it I felt increasing bladder urgency way beyond the amount of liquid that I’d had

01:54 I felt kind of wobbly so that I would get up and then I was a little bit unsure of my footing and so I walked into the restroom and that was really kind of unpleasant. When it was time to go home the walk to the car that was maybe a mile each progressive step felt like I was getting a little bit worse. I was getting hotter and I was getting more stumbly and I needed to hold on to the wall just help myself along

02:34 My feet didn’t want to pick up and so especially my left foot I noticed that as I tried to lift it just to walk foot in front of the other it just didn’t want to lift and I was almost dragging it behind me

03:22 Every day after that it was almost as if it fixed itself but then it just didn’t

03:30 A few days later our air conditioning went out and in the heat it was really unpleasant so we bought a portable air conditioner just to hold us over for a couple of days until the repairman would come out and I picked up the portable air conditioner and I’m fairly strong or at least I have been, I picked this thing up and it was pretty heavy, easily 80 or 100 pounds and I felt like my back was again just kind of going out that it would give up and I got the air conditioner into the shopping cart and I got it into the car but after that I felt like my legs just weren’t working quite right and I was a little bit wobbly again but then it just went away

04:19 The next day or shortly thereafter we went to the movies and I started to feel weird and my feet started to feel weird and so I’d start to get this little tingling in the bottom of my feet and then by the time the movie was over my feet were starting to actually go numb and so on the way home I decided this is something that doesn’t just get fixed with the chiropractor visits and it’s an ongoing thing this is something that actually needs an ER visit

06:04 And so I had a CT scan done and I had a batch of MRIs done at that time on my brain and cervical to make sure that there was nothing absolutely life-threatening that was happening but they didn’t have any good answers and the doctor said at that point we don’t know what the answer is and we’re going to get a neurologist involved

07:09 So I did go ahead and get admitted and they continued with a whole battery of blood tests and more MRIs

07:48 They also went ahead and did the lumbar puncture to get the spinal tap for a definitive diagnosis from lab tests

07:57 So this entire process actually took a a couple of days

08:44 I received my diagnosis and it was that Tuesday later on in the day that I got started with the IV steroids – a pretty hefty dose of steroids

09:25 I really didn’t notice any significant improvement that day or the next day when I also had an IV treatment or even the day after that with that infusion treatment. It was probably the fifth day of consecutive for infusions that I really started noticing an improvement to the major symptoms that I had and by that time before it actually got better I had essentially no feeling in my feet and very little feeling at all in my legs all the way up to my thighs

10:54 After the third day of IV infusions I was released and went home. They gave me a walker and at that point I lived in a two-story home with the bedroom on the second floor

11:07 I was able to walk just fine up and down the stairs but I had to look more carefully than I was used to just to make sure that my feet were actually where I thought they were because they would respond but I didn’t get the tactile feedback from exactly when the foot was on the stair or not so at that point

11:28 When I was being released they also had a physical therapy consult with someone to make sure that I was able to go up and down the stairs properly in the controlled setting of the hospital and they assisted my wife with some instructions for how to handle helping me

12:21 The outpatient infusions were slow but the whole process is slow even in the best of cases

12:44 Most of the people that were there in the infusion clinic there with me getting infusions were there for something entirely different, many of them with end stage renal disease or severe cancer

13:36 I started working from home for a few days as I transitioned back into daily life but I didn’t really have all the answers at that point either

13:46 I had the diagnosis and I had the treatment done, but I had no idea how much of my lost sensation that I would get back and I had no idea whether I would be going to need to continue to use a walker for a long period of time or not

15:50 Coming home I was able to adjust pretty well and work understood very easily that I was going to have some limitations that I didn’t even know what they would be for quite some time and I couldn’t know I was able to work from home for that week and then go back into the office the following week and that all worked out pretty well

16:31 I don’t think anybody that I had direct contact with in my work really knew very much about the disease because most people wouldn’t even in health care financial because the diseases that we deal with on a regular basis are all just on paper and not necessarily something that a person would have personal exposure to the patient

17:11So i got used to a little set of stories and explaining MS is essentially an attack on an electrical cord if that electrical cord is your nerve the sheath around it the insulation there is the myelin and what happens if you have that electrical cord where you get a little cut or you melt off some of that sheath around it you have a short and that’s what happens with MS and that’s something that people generally seem to understand

18:33 So it was probably a month and a half before I actually got my neurologist follow-up to start with disease modifying therapy and so during that time of course I had a lot of questions

18:54 I don’t think I got as many answers from that initial consult as I really wanted but I’ve been able to read a lot online to sort of fill in those blanks and now looking back on that I would have really have benefited much earlier from reading through the MS subreddit and getting the benefit of the wisdom of people that have been with it for years or decades to pass on little tips and tricks and things that I might relate to and that sort of thing

20:17 Without sleep your body will get worse faster

20:23 Additionally diet and exercise are very important and so I was able to get those tidbits from people

20:35 One of the things that I actually started doing on a regular basis was I have a green juice. I got a juicer actually a few months before my

diagnosis

21:07 And so i have this green juice that smells like a lawn mower and it is primarily cucumbers but also kale and spinach and a little bit of apple a little bit of kiwi and I’ve been having that at least four days a week but almost every day for at this point more than two years

21:44 I’m sure that some of the inclusion of the fresh kale and fresh spinach means some other vitamins that I’m getting on a regular basis that maybe I’m not absorbing very well otherwise. It might be better but I can’t really say for sure

22:10 I have been pushing hydration quite a bit. I usually have between three and five liters of fluid a day

22:28 I’ll have easily two liters before breakfast on a lot of days

23:43 I also start the day with a high protein meal. It’s egg whites and cheese

23:51 I use a Starfrite pan from Canada and it’s a special kind of nonstick so I just put the egg the cheese in there in the pan no oil just the cheese in the pan shredded cheese and let that start to melt a little bit then egg whites and as that starts to cook I fold it over to do an omelet out of it but it’s a cheese on the outside omelet.

24:45 When I was on an oral pill twice daily Tecfidera which has a risk of some digestive upset and some flushing I would avoid the flushing entirely and avoid the worst of the digestive upset by having it after that eggs and cheese meal which is heavier and it means that it forces the digestion to slow down a little bit

25:26 The fatigue from Tecfidera was pretty significant at first that I ended up a few days off work because of that both at the initial starter dose and again when I ramped up in a few weeks to the full dose which was twice the starter dose and I imagine that’s probably similar to how the reaction is on average for Vumerity because they’re almost the same medication

25:55 Tecfedera is now available in the generic which meant a problem for me because I was on the manufacturer’s co-pay assistance with that

26:09 If I went with the generic I’d have no copay assistance but once I navigated that by having the doctor prescribe it as dispense as written my insurance company got wise and said hey we’re going to tack on this penalty amount for getting the brand name when the generic is available so they charged extra, though it didn’t end up costing me any extra because it went to the copay assistance program

26:41 So there were a few months like that it it showed up as a roughly $2,600 per month penalty amount for getting the brand name

26:53 The manufacturer got wise to how much money that was costing them and they said hey instead of having this copay assistance unlimited we’re now changing the rules on you and starting in like three weeks it’s gonna be capped at twenty thousand dollars per year which on the surface would be perfectly fine for most people that have insurance even if they’re on an 80 20 plan. The cost of the medication after insurance does their contractual adjustment is going to be low enough that even twenty percent of that twelve fills a year is probably not over twenty thousand dollars

27:43 But my situation on a high deductible plan at that point where my deductible and out of pocket max were six thousand seven hundred fifty dollars a year I would hit that and then every month there was still the twenty six hundred dollar penalty and I just did the math and said well something’s got to change because I’m going to run out of copay assistance if I stay on the brand name and I’m going to have no copay assistance at all if I go to the generic and so either way I have to do something different or I’m going to have to pay $6,750 a year or more in out-of-pocket costs just for my maintenance medication

28:31 So I ended up switching just about a month ago to Ocrevus, a twice yearly infusion and that I expect is going to kind of solve that problem as well

28:46 I already hit my deductible and out of pocket maximum for the year for this year so my first set of infusions on that were totally covered to begin with. The pre-insurance cost for that the charges amount would be eighty six thousand dollars every six months

29:05 With insurance, the contracted amount would be thirty-four thousand every six months and that’s one of the big disparities in our health care system that we continue to perpetuate this difference between what one person pays and what the next person pays for the same service and the charges are not transparent because if you start with eighty six thousand dollars and then do a little shell game and you’re okay with actually receiving $34,000, why is that not the price up front and so that is something that I think is going to take a long time for our health care system to address in this country

31:29 I was able to get the appointment with my neurologist scheduled far enough out that I could wait for the four months between when I found out and when I would start on Ocrevus and not everybody’s able to do that

31:45 I’ve read online stories on reddit where people find out when it has already happened and they get the bill and at that point not only can they not fix it that month but it’s going to be that three or four months before a good solution can happen and for many people that means going without the disease-modifying therapy for those three or four months because they simply can’t afford it

36:30 Overall with Tecfidera I had only occasional flushing, the very mild that on occasions I would take some aspirin to help with that but I really didn’t need to treat it in general. On the occasions I had flushing it was when I failed to have the medicine at the normal time with my eggs to help kind of coat the stomach and so maybe I just had a light breakfast or I had it a little bit late and so it had an unprotected stomach to it

37:12 The digestive upset was basically every day for the time that I was on Tecfidera. The fatigue would come and go so some days were better than others in terms of fatigue. I’m not certain how much of that was just the drug and how much of that was MS in general and how much of that was maybe something unrelated entirely

37:39 Since I’ve been off of Tecfidera, I’ve noticed much less fatigue overall as well as having maybe more feeling of being able to do things physically and I’m differentiating that from fatigue because it’s one thing to just be tired and not want to go up the stairs but a completely other thing where going up the stairs feels physically difficult not from being tired just because of the exertion of it

38:16 So both of those were addressed by stopping the Tecfidera

38:23 And I’ve been doing exercise in a home gym situation lifting weights. We got a dumbbell set this year so that we can do social distancing but still have the regular exercise and I’ve been able to level up with the weights pretty consistently but after I got off the Tecfidera. I= feel like that that is speeding up and I’m getting better results faster so that may just be a momentum thing or it may be in my head or it may actually be the situation of the drug was kind of getting in the way, I don’t know for sure, but I like the results no matter what the situation was on that

39:19 The first thing in the morning I exercise just to get the blood flow but also periodically throughout the day because I’m working at home and I’m in my basement if I get a little bit of the afternoon doldrums the kind of tired and faded feeling lacking some attention span not having the mental clarity any of those things I’ll get up lift weights for five minutes get that blood moving again and get that mental clarity back and it comes very very quickly

39:50 I’m really surprised at how effective that is just to get up and get moving a little bit to help the day go better

40:39 I do know that the sleep and the sleep quality make a huge difference in not having brain fog and being able to have continued attention span throughout the day

41:03 For the most part I don’t on a daily basis use a cane a walker or any assistance like that

41:12 I do have regular physical therapy I’ve gone to for a couple of months and I now know some of the exercises that will continue my process to improve my range of motion and abilities in my lower limbs in moving just going forward

41:37 I think that it’s going to get better, that it’s going to continue to get better and if nothing else I can stop degeneration and I know some of that is from atrophy from allowing it to get worse and not really push my boundaries and so in that realm one thing that I would say is be sure to ask about physical therapy because it may be something that the neurologist or the primary care physician doesn’t proactively recommend but it could still be something that they order and insurance will pay for it and it’ll help

42:29 About Ocrevus, the thing that I noticed most about that first infusion was actually the steroid buzz that night because they gave me the pregame cocktail of some Benadryl and some cortisone and it was IV cortisone so it hits a little bit differently from the pills but I didn’t really feel much at that time and I didn’t have any adverse reaction to the infusion at all and I don’t think that there is anything that I felt from that infusion or the second dosage that I could say yes I feel differently because of the Ocrevus but I do know that the steroid treatment meant that I had interrupted sleep that night and so I really felt poorly the next day from that lack of sleep and I can say definitively that it was that lack of quality sleep that night that was why I felt badly the next day

43:32 For the second Ocrevus infusion treatment I addressed that by having the doxylamine succinate, the Nyquil pill basically and was able to kind of overcome the momentum of the steroid by medicating the other way and I had quality sleep and felt fine the next day

47:28 My wife is very understanding not only that my needs are different but also that I may not be able to fully communicate those needs at times that if I have a situation of intense fatigue that comes out of nowhere I get over hot or something like that and I’m just done for the day I may not be able to clearly and concisely say that and she’s able to pick up those visual cues to see that maybe I’m a little stumbly and I might need the cane or I might need to go sit down for a little bit or go be in the air conditioning or or something that it may be better just to get everything assembled for me as we go out the door in the morning because I’m used to how long things take before MS and what my normal process is in getting ready to go out the door. It’s very different now the amount of time it takes me to go up and down the stairs or to go through my mental checklist of do I

have my wallet do you have my keys do I have my watch do I have my sunglasses do I have the receipts for the things that I want to return do I have my shopping list prepared

49:28 So her being cognizant of some of my limitations and some of what I’m not able to adequately communicate is very very helpful

50:10I like to cook and my knife skills are noticeably impacted by my dexterity. At this point I have some limited paresthesia paresthesia in both hands, some of the pins and needles feeling and so I don’t have the same sensory feedback if I without looking reach into my pocket to grab something out I may not feel exactly that set of keys or that credit card. I may not feel a card at all

56:07 Looking back I’ve been able to identify things that almost certainly were MS 10 years before I got the diagnosis and even 15 years before the diagnosis that were probably it being active but at a lesser degree where it was not really diagnosable and not the same from one day to the next

56:33 I might randomly have a digestive issue that means that I have something that seems to not agree with me that day but that same thing causes no problems at all the following week which tells me overall because this happened many many times that it wasn’t that one thing it wasn’t that other thing. It was that something goofy was going on with my digestion that was not related to the specific thing that I was eating

57:11 Additionally I had some negative outcomes from being exposed to prolonged heat and I would get intensely fatigued after baseball games just being in the heat and I didn’t put that together with the MS until years later after the diagnosis but looking back I can say this is exactly why after being out in the heat for that baseball game I really felt poorly for the rest of that day

59:08 The MRI records show a vast number of old lesions that support that that say hey there was a thing at some point in the past and it happened many many times it probably happened over a number of years so chances are these old lesions are from things from events that happen that could have been identified as a MS flareup a long time before if all of the pieces were put together properly but they just didn’t happen that way

59:48 I had an event where I had some paresthesia in my left hand and they did the EMG (electromyography) test for the nerves in my arm and everything seemed absolutely normal probably because the issue with my hand was actually in my spinal cord and they didn’t know to look there for the issue and so it didn’t show up when they tested the nerves from my shoulder to my hand. Everything tested fine and I didn’t have other symptoms that they could absolutely definitively say hey this is the differential for MS as opposed to something else

60:28 So it just didn’t happen

62:10 During the day, I do to manage take a breath completely stop everything have a quiet five minutes in the middle of the day. I close my eyes and just be for a moment. Five minutes isn’t going to really interrupt the work day but that five minutes of clarity could make the rest of the work day much more effective

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

"Looking back..l"

Ray

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

Treatment for Ray's MS

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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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