Why I’m Taking a Chemo Drug #ButYouDontLookSick

Three weeks ago, I took my first dose of Methtrexate (MTX), a chemotherapy agent, and an immuno-suppresant drug, after months of persistent, debilitating chronic pain.  It had begun in my foot early spring, and by the time I started the drug, the pain had spread to my shoulder, elbow, multiple fingers, hips, and even to my jaw.

In beginning of August, I was diagnosed with Rheumatoid Arthritis by a Rheumatologist at Columbia after my second set of blood tests came back abnormal.

Rheumatoid arthritis is an autoimmune disease
in which the body’s immune system

which normally protects its health by
attacking foreign substances like bacteria and viruses

mistakenly attacks the joints.
(Arthritis Foundation)

The pain was always worst in the morning, when I first got up, and persisted for hours.  On my worse days, I was in tears trying to get out of bed, putting on my clothes, brushing my hair, or trying to put my hair up in a ponytail.  Throughout the day, I would be in less pain, but I would always be limping, or moving around in what I called the “T-Rex Pose,” because I was unable to keep my joints extended due to the pain.

Some days, the swelling in my fingers made it all but impossible to even type on my laptop, and the shoulder and elbow pain made it difficult for me to carry anything, even as light as a cellphone.  The pain in my foot has been around the longest, and makes my foot swell so much that I can’t fit into most shoes I own anymore.

To the left, you can see how one of my affected joints looks, compared to the other non-inflamed joints.  It’s almost double in size, and it’s been this way since mid-May.

The middle finger is “straight” in the photo to the right, even though it looks like it’s bent because of all of the inflammation.  Though the other affected fingers are not as apparent, I have a fairly “fattened” joint on my right index finger, as well as pain in the stem of the left index finger.

My Rheumatologist told me that with Rheuamtoid Arthritis, the arthritis attacks the joint closest to your hand and the one in the middle of the finger, but rarely the one at the top of the finger.

It’s pretty remarkable how many things you suddenly struggle to do when just a few of your fingers are out of commission.  Cooking (especially the large pans/heavy pots) and cleaning (scrubbing) are nightmares, as are opening lids and containers.

I recently got a Ring Sizer, so I used it to measure my busted joints.  The affected joint was a Size 10.  The normal one was a Size 6.  I hope it’s going to go back to the normal size, along with my other affected joints.

 

Wait… Isn’t Arthritis For Old People?

Image: Mayo Clinic

Rheumatoid Arthritis is an Auto-Immune disorder, and happens because of the inflammation of the fluid between the joints, which causes swelling, pain, and potentially eventual erosion of joints.  This can happen at any age, though women are 2~3 times as likely to have RA than men.

Osteoarthritis, on the other hand, happens because of wear and tear of use on the joint-caps, which is common with age.  So when you are thinking of the “Arthritis Old People Get,” it’s often the “Osteoarthritis,” not the auto-immune disorder.

Because the causes of the joint pain are different, treatment methods and interventions are also different.  With RA, you are trying to bring down the immune system’s hyperactivity so the inflammation will go down.  With OA, you need to find a way to fix your joints, because the protective layers have worn away because of use.  In both cases, joint damage may be evident after a certain time.

So What’s this Meth…? Met…? Metro???? Thing?

Don’t worry- I thought the same thing.  It took me 3 weeks to finally get the name.

Methotrexate (MTX) is considered a DMARD (disease-modifying antirheumatic drug), which is a category of drugs that are used to treat Rheumatoid Arthritis, but are otherwise unrelated.  They are tiny and orange, and it’s shocking to think that these little things only barely bigger than Mini-M&M’s could change the course of my life.

In large dosages, MTX is used a Chemotherapy agent for certain types of Cancer.  In smaller doses, it is used to treat Rheumatoid Arthritis by acting as an immuno-suppresant (making your immune system less active), and therefore disrupting the process for inflammation.  It is the first drug commonly prescribed after a diagnosis of RA, and it helps to ease symptoms such as joint pain, fatigue, swelling/inflammation, and prevent damages to organs and joints.

I don’t know about my organs, but at least my joints are intact, according to the X-Rays I got taken earlier this month, so I am hoping that getting in to Remission will allow me to live damage-free.

To start with, I am taking 6 of these pills every week (I arbitrarily picked Thursdays, so it’s #MTXThursdays from now on… LOL!), and daily dosages of Folic Acid.  According to my Rheumatologist, the Folic Acid is for the mouth ulcers that come from taking MTX due to lack of Folic Acid absorption (and totally not for the “stomatitis, gastrointestinal intolerance, bone marrow toxicity, and abnormal liver function tests” that he conveniently forgot to mention).

Because it’s such a strong drug, it’s one of those things with pages upon pages of caution tapes, but for now, I want to focus on getting into Remission so that I can start managing my lifestyle more holistically to prevent relapses.  It could cause serious damage to lungs, kidneys, livers, etc., but the most troublesome side effect is the negative effect it has on pregnancy.  I most certainly cannot get pregnant on this drug, because it will cause severe deformities in the child.

As a matter of fact, apparently it’s used as an Abortion Drug.  So if I were to look into having a family with children in the future, I am going to have to do a lot of shifting and planning, including stopping this drug 3-6 months before my pregnancy (which, of course, would put me in danger of relapse).

The Months-Long Struggle for a Diagnosis

An autoimmune disorder, rheumatoid arthritis occurs
when your immune system mistakenly attacks your own body’s tissues.
(Mayo Clinic)

The first doctor I went to basically told me that he thinks I am lying about my pain, because he can’t “see any inflammation” except in my finger.  The only thing I wanted to say back to him was, “If this is all made up, please please convince me that it’s not real so I can stop being in so much pain!”

He ran the first set of blood tests only because of the inflamed finger, which he couldn’t figure out.  And he wrote a prescription for an X-Ray of all the affected joints after my blood test came back positive for abnormalities, but still “only because of that finger; I don’t really think there’s anything wrong with you.”

My right elbow no longer can straighten all the way.  My Rheumatologist felt around the joint, and told me that the reason why I couldn’t straighten it is because there is fluid between the joints from the arthritis inflammation.  That just blew my mind.

The first doctor I went to pushed it around, and said, “Yeah, but I can straighten it when I pull on it.” YEAH. THAT HURTS.  I can go up to maybe 160 degrees before it starts hurting, which I think is an improvement from my worse days, when I couldn’t get it more than 45 degrees open from the inflammation and pain.

I took my abnormal blood test result and went to another doctor, whose response was, “Oh, honey… You are at the wrong doctor…”  But she promised to get me in to see the right doctor, and true to her word, once my second set of blood tests came back with extremely elevated numbers, she immediately got me into a rheumatologist’s office for the same week.  (Appointments are impossible to get in this industry.  The first one I tried was a 3 month wait, another one I tried to get does not have an opening until November.)

With my X-Rays and blood test results, I went to see the Rheumatologist in Washington Heights, 2 months after my initial plea to the original doctor to find out what was happening with me.  The pain made me want to just die some days, but I’m glad I’m finally diagnosed, and I’ve started a treatment.

The worst part wasn’t the pain, but rather, the rapid loss of mobility and progression of the “whatever it is” throughout my body.  I didn’t know what it was, so it was just a scary, mysterious “thing” that was taking over my body, one joint at a time.  And my first doctor didn’t do anything to help me find the answers.  Now that I know what it is, I feel much better, and much more able to look into the future, even though I know it’s chronic, and there’s no “cure.”

I’m actually pretty blessed in that my diagnosis only took a few months.  The average time it takes for diagnosis for Rheumatoid Arthritis is 1-3 years

#ButYouDontLookSick!

Socially the most difficult part about having a Chronic Illness and Invisible Disability is that most people don’t fundamentally “get” the concept that I am never going to “Get Better” or be “Cured.”  This is life long, just like my Brain Injury is life long.  I just have to thrive despite the struggles, make accommodations and modifications.  There are better days, and there are worse days.  Because it’s invisible, if I am “Acting Healthy,” people assume I am all better.  I’m not.  I just have extremely high pain tolerance (hello, getting head sliced open and stapled with 78 staples!)

When I share my story about my craniotomy, the most common response is, “…But… You’re all better now, right?”  No. I’m not “All Better.” My journey is life-long, and I’ll never be “cured.” I just look “Completely Normal” because of the accommodations and modifications I make in my life in order to appear so.  But every day is a struggle, and now, with added physical disabilities, it’s even more so.  Just because I’m walking around, working and chatting and laughing, doesn’t mean my Rheumatoid Arthritis and the Chronic Pain suddenly disappeared.  I’m just at the “low tide” instead of a flare.  It’s just not as bad as it could be.  And besides, no one wants to be around someone who’s constantly complaining about pain, right?

Some more Clinical Jargon

The below few paragraphs are taken directly from Johns Hopkins Arthritis Center’s “Clinical History” section of “Rheumatoid Arthritis Symptoms” page.  I’ve bolded parts that are relevant to my case.

The typical case of rheumatoid arthritis begins insidiously, with the slow development of signs and symptoms over weeks to months. Often the patient first notices stiffness in one or more joints, usually accompanied by pain on movement and by tenderness in the joint. The number of joints involved is highly variable, but almost always the process is eventually polyarticular, involving five or more joints.  Occasionally, patients experience an explosive polyarticular onset occurring over 24 to 48 hours.  Another pattern is a palindromic presentation, in which patients describe swelling in one or two joints that may last a few days to weeks then completely go away, later to return in the same or other joints, with a pattern increasing over time.

The joints involved most frequently are the proximal interphalangeal (PIP) and metacarpophalangeal (MCP) joints of the hands, the wrists, and small joints of the feet including the metatarsophalangeal (MTP) joints.  The shoulders, elbows, knees, and ankles are also affected in many patients. The distal interphalangeal (DIP) joints are generally spared. With the exception of the cervical spine, the spine is unaffected.

Nonspecific systemic symptoms primarily fatigue, malaise, and depression, may commonly precede other symptoms of the disease by weeks to months and be indicators of ongoing disease activity. Fatigue can be an especially troubling feature of the disease for many patients.  The pattern of symptoms may wax and wane over the course of a day and even from one day to the next.  Sometimes “flares” of RA are experienced as an increase in these systemic symptoms more than discrete joint swelling or tenderness.   Fever occasionally occurs and is almost always low grade (37° to 38°C; 99° to 100°F). A higher fever suggests another illness, and infectious causes must be considered, especially in patients who are taking biological therapies and immunosuppressive medications.

Morning stiffness, persisting more than one hour but often lasting several hours, may be a feature of any inflammatory arthritis but is especially characteristic of rheumatoid arthritis. Its duration is a useful gauge of the inflammatory activity of the disease. Similar stiffness can occur after long periods of sitting or inactivity (gel phenomenon). In contrast, patients with degenerative arthritis complain of stiffness lasting but a few minutes.

So… What Now?

Disability is higher among patients with rheumatoid arthritis with
60% being unable to work 10 years after the onset of their disease.
(Johns Hopkins Arthritis Center)

I disclosed to my manager, director, and HR few days after my diagnosis.  I explained the disorder, the treatment, and the symptoms of both the treatment and the disorder itself.  Because of the toxicity of the drug, I will have fatigue and mouth sores, if not upset stomach, and affected organs.  Because of the RA, I would be in a lot of pain, and there will be waves of “flares” and “good days” that are still mostly unpredictable.

I had to accept that there is a real likelihood that I will be unable to work after a bad bout of RA.  That I may become completely physically disabled, as opposed to temporarily.  There is a limit to how much pain and inflammation I can work through, and how much RA or drug fatigue I could take.  But work and I are working together to figure out ways to lessen the loads so I can continue working while giving my body the rest it needs to fight the inflammation and the disease.

We’ve established a Work From Home schedule of Wednesdays/Fridays for start.  I’m in the process of setting up a “home office” in my apartment.  My manager and director checks up on me daily, to see how I’m doing or how I’m feeling, and thankfully, my type of work is such that I can work from anywhere (few of my team members have recently gone fully remote, in different states) if needs be, so I still have options even if I’m unable to physically take myself to the office anymore.

I want to continue going to the office for as long as I can, because, as much of a pain my 2 hours-a-day commute is, I know I’m going to miss it when I can’t anymore.  But I also need to focus on going into remission so that I can continue functioning as independently as possible.

Mostly, it’s kind of like, “Oh… This again…” after my battle with Arteriovenous Malformation, Seizure Disorder, Craniotomy, and Brain Injury.  However, it’s a lot different in that:

  1. I’m no longer a student, and must work
  2. I must work because otherwise I won’t have insurance
  3. I must work because otherwise I can’t pay for my medical bills
  4. I don’t have anyone to help me make/go to appointments
  5. I don’t have anyone to ask questions and take notes at appointments while I sit there with a brain fog
  6. I don’t have anyone to help me manage the “administrative works” of making sure bills are paid and doctors followed up on
  7. I have no one to take care of me when I physically cannot do my daily tasks
  8. At the end of the day, if I am upset, I am in my bed alone to cry

I guess this is just what growing up means! I am very glad I had the previous experience while I was a student so that I am much better prepared for this round of battles.

I just got a $800 bill from my first Rheumatologist appointment, so I’m trying to balance a few scales to see how I can keep on affording my medical bills without having to worry about dipping into my cash (instead of relying solely on my HSA contributions).  The good/bad news is, I am only $19 from my annual deductible, so after that, I only have to pay 20% of the bill… Yay?

I guess the amount of money I’m saving from the 1 Paycheck Challenge is going to come in handy soon!

Running List of Thoughts

This is a running list of thoughts I have because/about/of Rheumatoid Arthritis in my life.

  • It’s really hard to type with busted fingers
  • It’s really hard to play Tsum Tsum when your fingers are constantly aching
  • These little Koosies for Your Fingers is a life saver! Does compression AND keeps your fingers straight during the night so you don’t wake up with painful claws in the morning
  • It’s really hard to open tupperware or jars of anything… Doing dishes and cleaning the bathroom are almost impossible
  • Slow Cooker liners are a thing, and they are amazing
  • Bathtub liners are also a thing, and a must have for the grimy, nasty, 100 year-old NYC tubs (soaking is good for the joints)
  • Running is no longer a thing
  • This drug makes me crave the most random stuff… Like bananas and bad Chinese food… And also has me snacking for no reason… But most things taste really bland
  • I’ve already gained 5 lbs since I started this drug… 3 weeks ago… Bloating? (I hope so!)
  • #YogaTuesdays are so important to my life now… I want to start going to the gym at least once a week again, and maybe do cycling
  • I’m so thankful for the support of my friends and work

So, That’s My New Journey

I hope you guys are having a better summer than I am! I’m brain storming ways to accommodate and modify my life so I can continue to have a stable income, goals, plans, and a future.  If I can beat Brain Injury at its game, I can beat an Autoimmune Disorder!

Have you had any recent health issues?  Do you have any meditation/relaxation rituals or resources you can recommend me to start my journey to ZEN? (Because stress = biggest trigger for a flare!)

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22 Comments

  1. I’m glad that work is being awesome and accommodating. It helps a lot to not have to worry about your job (as much) on top of everything else. Have you continued your morning meditation? Has it been effective at all? :c

    (omg bath tub liners look like they’re the best things invented… I kind of want to take a bath now, haha…)

    1. I haven’t done meditation in a while, because I’ve been opting to get the half an hour extra sleep to deal with my fatigue and drugs. I probably should go back to it, since I need to get back in the “zen-sphere” somehow…
      But yeah; the slow cooker liners and bath liners… I need to remember to get them at some point!

  2. I hope that you are able to find something to help reduce the pain. I also hope that you have people around to help you out when you need it. Good luck!

    1. Thank you! I’m slowly learning to ask for help/accept them when I need them. It’s a hard process because I’m such an independence-seeking person generally. But sometimes I need to just be grateful and accept it for the sake of my body!

  3. That’s pretty tough. Just reading through the post made me look up a few more items to help be better understand your situation. Looks like you’re very well-informed on the nature of RA, the treatment plans, and all its intricacies (and caveats). One of the things I find pretty impressive is how well you are handling it all. That’s maturity level that many should look at in awe.

    Haha, I agree. When you are in the situation where finding that inner peace becomes even more necessary, you become more adaptable and resourceful. Perhaps that is ultimately what you need to do in order to truly…”cure” it?

    Stay strong. 🙂

    1. Actually writing this post was how I learned about RA in general. I hadn’t done as much in-depth research as I wanted to on RA, but since I was writing this post, I decided to go deeper into it. Consolidating resources makes it easier for me to understand what I’m reading, as well as becoming a point of resource for other people, so I’m glad this post piqued your interest! You probably know some people with RA at some point in life!
      I’m hoping to go into remission, and to do that, I can’t rely completely on Western Medicine… I need to do my part with becoming calmer… So here we go with my attempts at becoming a bigger person… Haha!!

  4. I’m sorry to hear about the chronic pain and RA 🙁 For as long as I remember, my mom has had RA. When I was young, I don’t think I fully realized the pain and challenges that she has to deal with. I believe she’s doing at-home injections now to treat it.

    I really hope the medication works out for you and helps with the swelling and pain you have. That sounds so hard to deal with pain affecting the things you do daily. I can’t believe that first doctor though! How frustrating! I’m so glad you found a better doctor that could get you a diagnosis.

    I’m also glad that your work is accommodating and is working with you on this. I think that’s great that it seems like they really care. I’m wishing the best for you Hiro!

    1. Oh no, I’m so sorry to hear about your mom 🙁 My next treatment option is the home-injections, if this pill business doesn’t work, and I’m really hoping it won’t have to resort to it. The pill thing is already a little annoying because you have to get your blood tested every month or so, which is really expensive. :S

      I’m so glad I had it in me to say “Screw this doctor; there IS something wrong with me,” and making the moves to go to the next one. My life would be SO different if I’d allowed him to convince me that there’s nothing wrong…. :S

      Overall, I think my situation’s not all that bad given the circumstances. Hope it’ll improve after a few months! 🙂

  5. First of all, how an earth did I not know you still had a blog?! 0_0
    Second, OMG I agree with you about Slow Cooker liners being awesome! haha

    Ok, now for the point of my comment. I’m really sorry to hear about all the Chronic Problems you have been going through. I know about some of this because of your posts on facebook. I really do hope you go into remission soon, though I know it won’t be the end.

    Hearing your stories, fighting this stuff, really inspires me. I have been dealing with chronic illness most of my life and still haven’t gotten diagnosed for my joint pain that I have had for over a year now. Fortunately, my PCP at least put me on an anti-inflammatory drug that helps mask the symptoms so I can still work. Hearing your fight with the doctor is just crazy when you had such obvious symptoms! I’m glad they finally got you to the right doctor. ♥

    btw, I’m adding your blog to my blogroll. ♥

      1. Hehehe I’m so glad you found me again. It’s so exciting to find old friends in the blogisphere! I hope you’ll find out how to deal with your inflammations soon too. 🙁 Hopefully it’s not RA. But honestly, finding out what it was, as devastating as it is for someone as young as I am, was so liberating, because I feel like I can now tackle the problem and move on with my life, instead of being in a limbo of “unknown.” I see you tackling your health issues on Fb too, and gosh. We’re all too young for this!! :I

  6. I have a very close friend with RA, so I definitely understand your pain, and I applaud you for being so strong and continuing on. I know it takes a major emotional toll as well as physical. Sometimes the emotional turmoil can be worse than the physical symptoms, even.

    I too am so sorry you had this trial with your doctor, despite all your symptoms, and that it took so long before you got a diagnosis. I know chemo drugs aren’t easy, as I had a family member who was diagnosed with Hepatitis C, and had to take them for over a year.

    I’ve struggled with chronic illnesses as well, however, I consider myself lucky that my pain is not constant, and at least I get a bit of a reprieve here and there. You’re a strong, wonderful person, and while I know you’ll pull out of this, I also know it’s not easy going through it.

    I know we have barely even met, and live at opposite ends of the country, but I’d be glad to be an ear if you ever need. *hugs*

  7. Oh gosh…I’m so sorry you have to go through this! But I do have to say you’re dealing with it well. I’m glad you finally were able to get on the way to hopefully doing a little better with it. And it’s awesome your work is so understanding! Just take care of yourself!

  8. Oh Hiro, thank you so much for sharing this. I actually got super emotional / teary, I can’t even imagine the pain you’ve had to go through. As a Biomedical Science student, I’ve read countless books and papers about RA that goes into the science (causes etc.), but reading it from your perspective and your experience has really hit me. Often I just read about conditions, causes and treatment without really being mindful that it is affecting people.

    That is a huge medical bill… the UK is super fortunate in this sense because we don’t have that (yet…) but it really puts things into perspective on how important having money to fall back on is.

    I wish you love and strength through this, take care! You’re such a strong woman and I am in awe by how amazing you are, from the payday challenge, minimalism, ugh your ex and your condition. I wish I lived closer (I wish i lived in NYC!!!) to help out in any way that I can, but for now I’m always here if you need to talk to anybody! You’re never ever alone. <3

    1. You’re always like my personal cheer leader from across the pond! Hahaha. I always want to share my experiences and views, because I believe there is a lot compassion can do for us, both as the receiver and the giver, personally and professionally. And it’s easier to be compassionate when they can identify more with others. So I want to share my experiences, so people can “see” what we go through, and realize that it’s not all in the abstract. A lot of my doctors have been the “here’s a diagnosis and here’s treatment for it.” Kind of people, without much regards for how the treatment affects my qualify of life or my emotional well-being. A treatment can’t be considered successful if it makes me feel horrible, after all.

      The medical bills are insane, too. I’m really not looking forward to what I’ll have by the end of this month! LOL.

    1. Thank you so much! It’s so important for people to understand that we’re all around, and we are hurting because we have to pretend we’re ok! Stuff like diversity and disability and racial issues have made such headway in the past few decades… I hope we’ll continue the trend.

  9. I hope you will start to see results with the new drug and that the side effects would be too hard on you. Even though it sounds like it will be difficult.

    Whoa. I can’t believe that the first doctor was so awful! Thankfully you were able to find another doctor who could send you in the right direction!

    It’s fantastic to hear that your work has been so supportive. It’s really a hard fight with everything that you have to deal with, and I applaud you for sharing your story.

    *hug*

    I just discovered that I have an underactive thyroid problem. I just had some most tests done and will find out what happens next in a few weeks.

    1. Thank you! It’s quite ok now, considering what a strong drug it is. And I’ve been feeling MUCH better, though the pain level’s been going up for the past week or so again for some reason. I wish doctors were more receptive and perceptive… But some people just don’t feel too inclined!
      I hope your thyroid problem gets diagnosed and treated! :O

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