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[heyamandahey]

tl;dr

• My Hair Loss • How Rare is PMBCL? • Last Round of Chemotherapy • The Final Results • MF PICC Line Out!

[heyamandahey]

Farewell, 2021!

Well, it’s been more than a year since my treatment concluded. Since my hair has grown back, I have had the luxury of two haircuts and two perms to add volume. My little brother even got me a gift certificate to a salon in SoHo as my Christmas gift. So thoughtful!

Hair Status The hair saga has had its lasting impact, mostly psychological at this point. I waffle between growing it out as much as I can and never letting it get too long ever again. I think about what cancers or maladies I may face me as I get older, and I don’t want to lose a few feet of hair ever again, so I am tempted to keep it chin-length. It does not strike the same level of anxiety as it did in 2019, but these thoughts do cross my mind with regularity. 

As it’s been a few months since my last perm in late August, I have been petting the roots of my hair as it grows in straight. My roots actually do feel less baby fine than I remembered it being at the start of 2020. I’m pretty sure it’s still slightly finer than my old hair, but it’s okay! I can make this work.

Year in Review What new things did I do this year? Any firsts? Sometimes it is the little things ... Maybe they’re commonplace for everyone else, but then there are small milestones for the individual to uncover, and these are mine:

Asked for a raise at work (and got it!)

Dispatched a lobster

Walked a dog by myself (and picked up its poop!)

Took a pottery wheel class

Visited Disney World (Epcot Center)

My boyfriend asked me if I wanted to move in with him!

I am delighted to report I am still dating this guy I met back in April of this year. His name is Dan. He has really helped make the last several months fun and hilarious as we’ve collectively navigated the pandemic’s evolution and its influence on dining, drinking, and traveling. 

While I haven’t left the country since 2020, I have had the fortune this year of visiting the following domestic locations:

Annapolis, Maryland

Okoboji, Iowa

Newport, Rhode Island

Chicago, Illinois

Milwaukee, Wisconsin

Orlando, Florida

Philadelphia, Pennsylvania

Tonight we will be cooking a few dishes together to ring in the New Year. Cautiously and optimistically looking forward to 2022! Hopefully there will continue to be new milestones.

This will be my last entry. I am declaring my journey with PMBCL complete. I will have to perish from something else, but today it is not lymphoma. Feel free to continue following me on Instagram or TikTok!

[heyamandahey]

Booster Shot Acquired!

October 3, 2021

Final CT Scan? Well, it actually did not happen back in July as it should have. When I scheduled one, my health insurance, Cigna, did not want to cover it. Their response was essentially, "Well, we don't feel like we should cover this scan unless you show evidence of the disease," which means even if the tumor has started growing again, they want to wait until it starts to crush my lungs and ruin my life, and then they'll consider approving it after a doctor has asked for it on my behalf.

There is no support for preventative care in American health insurance. I cannot get a scan to double-check that everything is fine. I have to wait until I can't breathe again. If I wanted to pay for this scan out of my own pocket, it would be around $800, which is just ridiculous.

Hair Perm Because my hair grew back so baby fine, I decided to finally do something about adding more volume. In early June, I looked up a few salons in my area for a root perm or body wave perm. Unfortunately the curls start to fade after about three or four months, so I got a second body wave perm at the end of August. While the curls are not exactly how I thought they would turn out (as based previously on wigs I wore when I was bald), it has overall helped me feel more confident to have less wispy hair.

Booster Shot Thanks to a friend for calling it to my attention! When the COVID or Pfizer vaccines first got rolled out, there were at least two or three rollout phases before those in remission qualified to get their first shot.

In NYC, it turns out those of us in remission qualify for a booster shot right now! I got mine yesterday afternoon in a building around Times Square that used to house the NFL Experience. Because of its proximity to the Theatre District, little Broadway posters hung around the white medical partitions, haha. What a combination. Schedule your appointment now.

[heyamandahey]

Thinking About the Last Exam

Photo above is from mid-March after my second haircut, something simply unfathomable when I was growing my hair out again

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May 10, 2021

We're getting into the homestretch before what hopefully will be my final examination sometime in July. I still have to schedule it. Some days, I can nearly pretend my chemotherapy treatment had never happened at all while other days I recount every uncomfortable side effect and wonder what affliction will strike my body next. Another cancer? Stroke? Random blood clot? But as things of this nature seem like a roll of the die and out of my control, there remains nothing left to dwell upon, so my only option is to look ahead. 

2021 This year has been good so far. It feels strange to find joy during an on-going pandemic: I have been taking pottery wheel classes with the new friends I made in 2020; been regularly trying new bars and restaurants around Brooklyn; and gotten to work remotely with friends in Maryland. This weekend I finally get to see my parents and little brother! I am ecstatic to hug them all, haven't seen them in-person since 2019. Life after the second vaccination has brought bittersweet peace of mind to enjoy activities many of us previously took for granted. 

Reflecting on Past Guilt When I was under-going treatment, I remember feeling a sense of guilt that my side effects were not as severe as others I had read about or that I only needed six rounds instead of several dozen. Prior to my tumor, I would have presumed the cancer patient to feel unlucky, but once I was in those shoes, I could only think about others that had it far worse, and I wondered how I got so lucky to have acquired one with such positive outcomes and few treatments. 

Life is weird. 

The Worst What-If There is the small possibility that the tumor could start growing again. While not likely, it's not impossible. How would I feel about that? The analogy that sprung to mind was one on jury duty, lol. While it's statistically not likely one's name would come up at any given time, it will eventually. No one is invincible. 

I suppose in the worst-case scenario, I would explore the options available, then make the most of whatever time I had left, be it months or decades. I have had the great fortune in having lived a full life with so many varied experiences: the awe in watching a peacock majestically descend from a tree on a farm in India; the anticipation before giving a meticulously thought-through gift I've been waiting to hand to a friend; the glory of seeing my name and work in a glossy magazine; the joy of making a friend laugh really hard at one of my stupid jokes ... 

[heyamandahey]

Remission for VIP Status

Left taken August in 2019 when I still had my PICC line. Right taken February 2021 for Lunar New Year!

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February 20, 2021

Vaccine My state recently expanded their eligibility requirements to include individuals in remission! Since my immune system returned to normal many moons ago, I had previously assumed I would get the vaccine along with the general public. What an unexpected status bump to receive. See you later, peons! 

Minus the poor web site experience, I managed to successfully schedule my first vaccination dose! If all goes as planned, then I should receive my second vaccination toward the end of March. Fingers crossed! 

Dating During COVID Compared to pre-pandemic, it has involved more video calls as a precursor to in-person dates, along with more restaurant or bar reservations made in advance since outdoor seating has been much more limited the last few months, indoor dining aside. I once made the mistake of not making a reservation, thinking it would be easy to find a table for two at any number of places nearby. I was wrong: every place was booked, and we ended up at a restaurant that did not serve any alcohol. Alas. 

Haircut Although the overall texture has remained far finer than my old hair, I can at last pull it all back into a centered ponytail, now that the hair around my crown has gotten long enough. 

Just ahead of last Thanksgiving, I did get my first haircut finally! After the mullet portion was officially severed, I tried to request something akin to an angled bob, thinking it would be more visually-interesting than an ordinary blunt cut, but the barber stated that I did not yet have enough hair for it. The three words of “not enough hair” was certainly deflating, but I reminded myself that my hair will keep growing. I will try again in the spring! 

[heyamandahey]

One Year After Baldness

November 2019 at our AirBnB in Seoul

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November 7, 2020

Almost exactly one year ago today, three friends and I were spending a holiday in Seoul, South Korea, wandering the city streets, singing karaoke, and eating copious amounts of fried street food. I packed three different wigs with me on that trip, so I could wash and dry them after each use. They definitely kept my bald head warm, and I felt incognito. 

November 7, 2020, a full year later of growing my hair out. No trims or cuts yet. Some product and hair straightener to emphasize the natural layers tho! _____

While I am currently not doing anything quite as international this time around, I am finally starting to feel more emotionally comfortable about a future haircut. Perhaps I'll pay a visit to the salon of the man who helped me get a wig last year, courtesy of the American Cancer Society. 

Although I have continued working out most days of the week, I have noticed the ab muscles on my right side occasionally cramp up, which I suspect is more a lingering side effect of the second biopsy, rather than the chemotherapy. Who would have known! 

In lighter news, it has been more than a year since my last chemo treatment, so I am eligible to donate blood again! Add in today's official political announcement, and I am feeling extra good and optimistic about the future. ^.^ 

Please get your flu shot, wash your hands, and be kind to strangers. Most struggles are not apparent at the surface. Love others, especially yourself.

Side view, not the aesthetic I prefer, which is why I still wear it in a ponytail when I leave the house, haha

[heyamandahey]

Reflecting on a Year Ago

September 1, 2020

This time last year I had just finished my fifth treatment of chemotherapy and was looking ahead at mid-September to hurry up and finish the whole process. I desperately wanted to just be done, so I could solely focus on my recovery, gain back my strength, “get back to normal,” whatever that means any more. 

Today I came across a web comic on mental load. While it’s geared more toward struggling mothers, it still felt relatable. As a woman, we are often asked to juggle a myriad of tasks while simultaneously maintaining some semblance of a sunny disposition, no matter the circumstances. It is a lot to ask of any one person. 

I often count my blessings in how glad I am that my condition struck in 2019 and not this year. Things really always could be worse, right? As it stands, last year certainly remains one of the most difficult periods of my life. 

Here's an approximate list of my mental load last summer:

Tracking appointments for all my treatments and scans, held at different locations during the week versus weekends, as well as different floors

Remembering to take Prednisone (steroids) every morning with food

Wrapping my PICC line in plastic wrap and packing tape before every shower

Confirming my office meetings do not conflict with times I have to pick up a new chemo bag, including the walk there-and-back, plus wait time

Checking my blood sugar every morning to make sure it's not spiking from the steroids

Before finding out I was slightly allergic to allopurinol, I had to make certain to take it at the right time of day because of its drowsy side effects 

Ensuring my PICC bandage is dry and intact every time I wash my hands, especially on sweaty or rainy days

Sleeping with my chemo bag carefully-positioned, so I don't accidentally dislodge it, get tangled among the tubes, or get annoyed by the constant clicking sound of the pump 

Selecting foods soft enough to not irritate my mouth sores but still provide nutrition

Reminding myself I am not ugly for being hairless and that my hair will eventually grow back 

I suppose none of these on-going tasks could really have been delegated to anyone to help me offset my mental load as the comic proffers. It wasn’t easy keeping an upbeat attitude on the daily among all the things I needed to track throughout treatment. Was I doing everything right? Did I forget anything? Is it enough? All of it together felt draining. 

Before Treatment My friends helped me tremendously when my diagnosis was still pending, when I couldn't say for sure what was happening to me. They brought me sandwiches, chocolates, phone chargers, and toiletries to the hospital. The first time I met with my oncologist, they patiently sat with me to learn about my treatment process and took hand-written notes. They came with me to a wig appointment to help choose the best-looking hair piece. When all my chemotherapy was done, they threw me a party, decorated my room, and baked me brownies. 

Overall During life's most trying times, we should not be too proud to ask for help when we need it. Generally-speaking I strive to be completely independent, to be able to say I did everything on my own, but I should have gone to a doctor sooner. I should not have waited until I was breathing through a two-millimeter opening. 

While individual independence has its time and place, there is no need for this to be a universal construct. We can help each other because it is the compassionate thing to do, and we need not wait for our friends to ask this of us. We should learn to offer our love and time more often. 

[heyamandahey]

Hiding My Mullet

August 9, 2020

I am finally branching out into other cranial accessories as my hair grows back from its formerly bald, lunar surface. While I see cute ribbons being sold upwards of $12 or more, I have elected to be resourceful and sift through all those old cloth belts from tunics and dresses of yore. The one in the GIF is from a jumpsuit my mom got me for my birthday last year, haha. 

Presently the hair on the back of my neck is getting out of control, but the idea of getting it trimmed sounds irrationally horrifying? Am I actually preferring to keep a mullet right now? Who am I? Losing my hair last summer was so emotionally traumatic that there’s still a residual part of me that is very averse toward losing even a single strand ... I know I will get it trimmed eventuallyyyyy, but I want to wait for it to be closer to a bob first, so that won’t be for a few more months most likely. 

Today is also my dad’s birthday! Next week will be mine. Be right back, have to give someone a call ...

[heyamandahey]

Summer Hair & CT Scan

Left to right: Trying to show how long my hair really is right now / My hair dry, no product / My hair still damp from a shower

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Friday, July 3, 2020

CT Scan

Yesterday I arrived for my six-month CT scan follow-up from my last one in January. The process was generally the same, except waiting room chairs were either removed or positioned with Do Not Sit Here signs to encourage social-distancing. When we need to change into a gown, we remain in the changing room and wait to be called as well, rather than returning to the secondary waiting area. Everyone is good about wearing a mask. 

This morning my hematologist called to inform me of my results: the tumor remains dead and continues to shrink! Apparently it will never fully go away as it sheds itself into my bloodstream at a glacial pace. Currently it sits at 2.7 x 1.5 cm, previously measured 3.3 x 1.7 cm in January. I do not require another scan for another year. 

Before my diagnosis in 2019, it grew up to 8.8 x 4.8 cm or size of a large peach, ha. My trachea then was only about 2 mm wide at its most narrow opening. 

Before (Left, April 2019) and After (Right, July 2020)

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Hair Update

It is finally long enough to put into miniature pig tails, minuscule pony tail, or any other farm animal tail. I am slightly surprised at how long my hair has to be to continue looking so short; while it's almost four inches, it scarcely seems like two without a bit of product. 

The texture still feels thinner overall, so I suppose it is a permanent change from the chemotherapy. Things could be worse. I am trying to take comfort in how softer it feels. Should I ever have to go through chemo again, however, I feel like I may stick with a buzzcut indefinitely, haha. 

Somewhat to my dismay, the hair in the back already covers my neck! Why should my neck receive bangs before my face does? In another couple months, I feel like I'll at least have a more proper side-swept fringe. My mom and little brother have given me tips on how to use something called “fiber cream” in conjunction with hairspray to maintain a style for when, you know, I go out. To get groceries. 

[heyamandahey]

Under Quarantine

Hairstyles from left to right: Turn That Fake Volume Up, Is This a Recession Crisis, and How a Hat Covers Everything Up

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Sunday, April 26, 2020

My hair continues to grow! I didn't even realize I could tuck some of it behind my ears again, something I haven't done in nearly eleven months, until a friend mentioned it over a virtual happy hour. She recommended the pomade Suavecito to help me start exploring other styling possibilities. It continues to be a little strange to get little hair milestones like these: being able to part it again, being able to tuck it behind the ears, et al.  Leftmost photo: this is my attempt at some sort of coiffure. You can see how happy I am. I don't love it. Despite finding photos of other Asian women with short, chic styles as "hairspiration," I don’t feel confident or glamorous nor does it feel like me, but it's not forever. Even before the pandemic, my short hair did not bother any cute guy I went on a date with, so I will continue to remind myself of that. 

Middle photo: I found what feels like a receding hairline. It seems like the left side is growing a bit more thinly than other areas. Commence profound Googling at 5:30 A.M. one morning until I found text to reassure me this is normal. If it's still like this six months from now, however, it will likely indicate my hair has just gotten thinner permanently. Alas. 

Right photo: When I do not style my hair, it's reminiscent of Mark Zuckerberg, and no one wants that. Perhaps until my hair gets to my jawline (or at least some bangs?), I will continue to wear a hat. Unless the unbearable summer heat arrives. Whichever comes first. Hah. 

MRW I comb all my hair to the front. No number of filters will fix this monstrosity. Upside: when your hair grows back after being completely bald, the ends look naturally feathered, so that’s nice

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Sheltering in Place Living in one of the U.S. epicenters during a pandemic has had its ups and downs. I am thankful that my job has not been affected much; some client projects were put on hold, but my plate continues to be full. I feel extremely fortunate to exercise creativity and logic on a salary when so many cannot. Working from home has made it easier to fit in a quick workout before my morning shower as well. Gotta find those silver linings where we can, right?!  While I have not rigorously baked as so many have on Instagram, I have started growing scallions, drawing again in my sketchbook, been playing DnD with my besties, and taken a renewed interest in Twitch, finding new favorite streamers and delighting in people play Animal Crossing in all corners of the world. Despite these dark times, we can still find new joys. 

Drawings I made for friends earlier this year with Prismacolor pencils my older brother gifted me in 2003. I deliberately made these on graph paper to help avoid “feeling precious”

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[heyamandahey]

Hello from Europe

February 18, 2020

I'm actually on my way back to the States today, having spent roughly three days in Prague, Czechia, and last night in Dublin, Ireland, as part of a long layover. Going through customs with a wig and hat has garnered different reactions. It seems as though security in Ireland, both on the Irish and pre-clearance American side, will accept the wearing of a wig but not a hat of any kind. 

My hair is now more at the length of a pixie cut, but naturally it's been advantageous to wear the extra headgear for warmth and aesthetics through chilly weather. When I go without, I apparently have a cowlick! As a child, cowlicks were something I only read and associated with boys' hair. Amusing to have one myself now. 

I passed my last CT scan with flying colors. The dead mass continues to wither away, currently down to 3.3 x 1.7cm! 

As my hair continues to return, I find my hair inspiration shifting from bald to buzz-cut to pixie cut looks on women. I don't remember a time when my hair was ever shorter than my jawline, even though it must have been, so this whole short hair thang continues to be novel. Still I long for a time when I can braid it again, but I will enjoy the conveniences afforded in my current state while I can.

One surprising thing is that I thought once my hair disappeared, perhaps the catcalls on the street would as well. They have not! That felt strangely uplifting and disheartening at the same time. Who would have thunk it ...

[heyamandahey]

Remission to Mars

December 30, 2019

It can feel so trite to see another yearly round-up as 2019 comes to a close, and a new decade lies ahead. On the other hand, this isn't exactly my Spotify year-in-review, and considering I likely would not have celebrated my 34th birthday this summer had I continued to ignore my symptoms, I am doing a monthly highlights recap because I am alive to do it. My personal growth does not end at age thirty-three.

January — No noticeable breathing issues, but I do notice every backbend in yoga has been making me cough. I feel like it's been like this for the last few months. As an aside, I ask Gavin to be my boyfriend. He agrees!

February — I am sniffling essentially around the clock, but I presume this pesky symptom will go away. Gavin tells me he “doesn’t want to mess this up.” I meet up with some friends in Berlin over Presidents Day weekend.

March — One of my best friends, Samantha, gets married in Florida. I feel like my neck has aged two decades overnight from the sudden puffiness. I guess that anti-wrinkle cream doesn’t work. I regret choosing a strapless dress. As one of the bridesmaids, I am blowing my nose regularly from what feels like a post-nasal drip and insist to everyone I am not sick, despite coughing every four minutes. 

April — It is getting difficult to breathe normally at night unless I am on my side. Inhaling steam and taking OTC meds are no longer sufficient. An x-ray leads to a CT scan to the ER and ICU. Later that month, I would meet Gavin's parents at his thesis presentation, and he would tell me he missed me. 

May — My parents come to stay with me for nearly the entire month. After two biopsy procedures, I receive an official diagnosis for what all the medical professionals had suspected from the very beginning: mediastinal lymphoma or PMBCL. We delay starting chemo by a week, so I can attend my older brother's wedding in California, held the same night as the Game of Thrones series finale. That made it into my little brother’s best man speech, haha.

June — I start birth control and complete two rounds of chemotherapy. My hands fumble and drop an inordinate number of objects from the neuropathy, including my phone. My hair falls out even faster than expected, so we have a head shaving party. I am really so lucky to have such supportive friends and family through this entire process. Gavin indirectly tells me he loves me. 

July — After my third round of chemotherapy, I am officially halfway done with treatment! Gavin breaks up with me very suddenly. I am devastated and confused. My magnificent friends and family continue to support me for a very different reason now. I see a therapist for the first time.

August — My little brother comes up to visit me for a few days over my birthday. I am very happy he's here to celebrate with me; we normally only see each other in the winter months.

September — My last round of chemo! I declare mouth sores to be the worst part of the entire treatment. Outside of that, one of my cousins gets married in San Francisco, which also gives me an opportunity to see my older brother. Beyond family trips, I speak with a third therapist. On our second appointment, she sees no need for me to come back.

October — I finally get the PICC line removed and am officially in the clear! A good friend and I embark on a weekend yoga retreat, and at long last I am able to unfreeze my gym membership. 

November — A couple girls and I travel to Seoul, South Korea, for vacation. We had been planning it long before even my diagnosis, but it feels like there's so much to celebrate on this trip. Even if I am currently hairless and boyfriend-less, I know both states will be temporary. 

December — All of my neuropathy is gone! I have been going to the gym three to five times a week, sometimes taking two classes in a row. My hair is growing back, and even my dad encouraged me to leave the house without a wig. What a way to speak familial love without using the three words. 

What lies ahead now?

A routine CT scan has been scheduled for mid-January. I can't remember with 100% certainty if scans are to be done every six months or so for the next two years, but I believe I read something along those lines.

I still have four scars from my second biospy. Despite using lightening creams, it’s been slow to see much progress. I am considering getting a tattoo to cover it all up, and since I have never taken the time to get one, that would also serve as a new experience.

Despite all the awful things happening all around the globe and my propensity to brood over problems large and small, I am choosing to remain carefully optimistic and looking ahead toward a fresh start. As they say, change is the only constant. While good things may not last forever, neither do the bad.

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[heyamandahey]

Where did you buy your wigs?

Amazon actually! Three of them are by the brand Beron. They're affordable around $16-20+, depending on the color, likely more meant for costumes than realism, but they're comfortable and fun. My wigs receive far more compliments than my real hair ever did, haha!

If you're actively still receiving chemotherapy or other treatment, you may be able to get a free wig through the American Cancer Society. Some locations let you book an appointment online; I had to do mine over the phone. Search for a locale at https://www.cancer.org/about-us/local.html

[heyamandahey]

Small Update

This photo was actually taken on the fifth of November, so it’s not the most recent picture to pair with this post because my hairline is much more visible now, BUT bonus! I am wearing colored contacts! You can barely tell! 

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Friday, November 22, 2019

Hair It’s slowly coming back! I am starting to see my hairline again. It's still very fine right now, akin to baby hair, but in another month or so my "real" adult hair ought to grow. 

My eyebrows have fully returned, and I spot a burgeoning lower lash line again. As my nostril hair has similarly come back, I am glad to say my nose is not constantly running anymore. It would never make the track team. 

Neuropathy Viirtually all gone. My hands and fingers feel almost completely normal, and I barely mind that pesky one-percent of numbness. I can't wait to play guitar and piano with only several dozen mistakes instead of several hundred.

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[heyamandahey]

MF PICC Line Out!

Friday, October 25, 2019

Finally got my PICC line removed from my arm this past Tuesday! Aside from the hair loss, it was the last vestige to indicate I had undergone any sort of treatment this summer. 

It's been liberating to shower without stressing if I'd gotten the bandage wet or to pick garments without debating if I wanted to wear a sleeve cover or not. It's the little things, you guys.

Neuropathy I feel like over the course of the last four to five weeks, my hands have gone from feeling 50% numb to roughly only 15%! Another relief that it may not take an entire year for all my nerve endings to grow back. 

Hair Not much activity on the scalp yet, but my eyebrows are returning! I've been drawing them in slightly the wrong place the last few weeks, haha. 

Google says it may be another month before I see any real hair growth on the scalp, so we'll see. A part of me fears I'll be bald forever. If brows and lashes grow at one-tenth the speed of head hair, why am I seeing my eyebrows grow back first before my scalp?

Either way, I plan to take advantage of my baldness by dressing up as Nebula for Halloween. ^^V I dressed up as Gamora when the first Guardians of the Galaxy came out, so it'll be fun to dress up as her sister this time. 

[heyamandahey]

The Final Verdict

My oncologist making a voice recording for posterity

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I am cancer-free! I am officially in remission! 

What a whirlwind it took to get here. They released the results of my PET scan about an hour before our appointment into the hospital app, so naturally I took a peek. Among all the medical jargon, I see measurements of "4.0 cm x 2.2 cm" and phrases like "soft tissue remaining.”

My heart sank. Does this mean I will need radiation after all? Am I part of that ten-percent? Will I get breast cancer? My thoughts spiraled downward quickly. I started to tick of the tasks I would need to do to get my affairs in order. Is this why the universe has made it so hard to find lasting love? Am I just going to die in a year? My eyes welled up with tears as I walked the 20-minute route along the city concrete. 

After sitting in the waiting area and sitting some more in the examination room, my oncologist finally entered. "Your PET scan looks good," he declared as he plopped down at the computer. 

My ears did a double-take.

Reality Check He explained to me that the measurements referred to essentially scar tissue. The tumor is dead! It will continue to shrink a little more, but it has officially demonstrated a "complete metabolic response" and stopped growing.  

He showed me a side-by-side of my PET scan earlier this spring to the one I had the day before:  on the spring scan, my tumor lit up; on the recent scan, it is completely absent. 

He scrolled through some other images. Although I have had the approximate dimensions of how large my tumour was in the beginning (roughly 9 cm x 4 cm x 3 cm, I think?), I hadn't seen it in relation to my other organs. Its size and shape almost looked like another heart! The size of a whole other organ between my lungs! Wild. 

Next Steps I will get my PICC line uninstalled, and then I will have another CT scan in three months, which I guess will be sometime in January of 2020. 

The biggest part of the saga is finally over. Even within four weeks, I can feel the neuropathy receding as more feeling returns to my fingertips and palms. Finally I can truly relax: drink alcohol without steroids, eat spicy food without mouth sores, and most importantly, grow out my hair!

[heyamandahey]

The Real Test

Wednesday, October 9, 2019

Today's early morning PET scan will determine whether or not I still have a tumour. Whether or not I have radiation therapy. Whether or not I have to keep the PICC line in my arm. Whether or not I need to buy more plastic wrap for the PICC line. 

I have a follow-up appointment with my oncologist tomorrow afternoon. I am hopeful. Even in the worst-case scenario, based on some light Googling, it could range from one to four weeks of daily radiotherapy, which means it would inconvenience work, but it would be over before next month's rent is due. 

Remaining Struggles Although I have been hairless for slightly more than three months and am generally accepting of my own day-to-day appearance, just now I caught a glimpse of my bald silhouette as I opened my laptop, precisely when the monitor is dark and reflective preceding login. 

I didn't recognize her, my own reflection. I suddenly wanted to cry, and I hardly knew the reason. It's not that I felt ugly or unattractive. More akin to a sense of my former self being gone forever. I have only found greater self-acceptance in the last half decade, and I am presently being radically-challenged. Hair halfway down my back? Gone. Boyfriend I deeply loved? Gone. Identity as someone that’s never had cancer? Gone. 

Regardless of the results tomorrow, I will now be someone that has gone through chemotherapy firsthand. Had a PICC line installed in my arm. Taken anti-nausea meds. Will I start referring to things in my life as Before My Diagnosis and After Chemotherapy? I did not ask for this to become a part of my personal history, but now it's irrevocably become a part of who I am.