Thursday, November 26, 2015

My Thanksgiving 2015

Earlier this month I celebrated one year of being cancer-free. Yay! It's been a strange year of ups and downs, as life is wont to do. Ultimately, I am incredibly blessed and have much to be grateful for:

—I'm grateful for eyelashes and eyebrows. I'm grateful my bangs hang over my eyes. I never thought I'd say this, but I'm also grateful for arm hair and stomach hair and back hair. You never notice how important some things are until they're gone.

November 2014
February 2015

—I'm grateful I can breathe without chest pain. A month after my final chemo treatment, I lay in my bed and inhaled a great, long, marvelous breath and there was no pain! I breathed for several minutes, reveling in the complete comfort I felt. Breathing air. No tenderness. No restrictions. I was free!
(Bonus: I can wear normal bras again! The tightness of bras exacerbated my chest pain and since no bra in the market matched what I needed, I had to create a makeshift bra to wear during the chemo months.)

I'm grateful I can run. And take long walks in the park. And go shopping without feeling like passing out (or vomiting).

Mom and I went to Disneyland in February! Super fun!

—I'm grateful I can carry a purse. (Although I've grown rather fond of the mini purse).

—I'm grateful I can chase and wrestle my nephews, and give them piggyback rides.

—I'm grateful that when I had to change insurance providers, I was able to continue with my regular oncologist's care.

—I'm grateful I finally, finally finished my MFA! Hurrah! Thank you to my kind and understanding professors—Hillary, Chip, and Amanda—for supporting me while writing my thesis. =)

—I'm grateful I survived a season of unemployment and eventually found a full-time job. (Update: A week after originally posting this, I received news that I was going to be laid off. Huh. Onward to new opportunities!)

—I am extra grateful to my friend Mack who took me on an epic expedition! This summer we went to New York, Ireland, Scotland, England, and France. Of all the historical sites and museums and plays we saw, my favorite aspect of the trip was having energy to visit everything! We walked an average of 10 miles each day (our record high was 17 miles). Among our more rigorous activities, we hiked to Arthur's Seat in Edinburgh, climbed 528 steps to the top of St. Paul's Cathedral in London, and ascended 704 stairs of the Eiffel Tower in Paris. Considering during chemo I barely had enough energy to make a round trip from my bedroom to my kitchen, being able to hike and climb this summer was a blessing. Thank you, Mack! (Also, watching Jack Gleeson (a.k.a. King Joffrey) and his friends perform in Bears in Space at the Soho Theatre was astronomically delightful!)

Mack and Me atop Arthur's Seat, Edinburgh

We hiked from Arthur's Seat (left arrow) to Edinburgh Castle (right arrow) and obviously to the Ferris wheel.

July 31, 2014
Chemo Costume #6
Hermione Granger
(not Voldemort!)
July 31, 2015
Enjoying hot cocoa at The Elephant House,
where J.K. Rowling penned
Harry Potter and the Philosopher's Stone

St. Paul's Cathedral

Eiffel Tower

—I'm grateful for past experiences, present blessings, and future adventures!

Thank you to everyone—family, friends, neighbors, kindred spirits—who has supported me. I wish you the best with your endeavors!

Happy Thanksgiving!

Friday, April 24, 2015

My Side Effects: Chest Pain and Heartburn

Although six months have passed since my final chemo treatment (hurrah!), there were several posts I drafted during chemo and never got around to posting because I was too exhausted to keep up. So here I am, half-a-year later, finally getting around to updating those drafts. I figure a few after-the-fact posts are okay.

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Chest pain and heartburn. Not exactly the same.

Throughout the course of my cancer adventure, the reasons for my chest pain varied.

At first, it was probably the tumors growing under my sternum. Plus, my anxiety facing the possibility of a difficult diagnosis. Although "pain" isn't the right word for what I initially felt. In some notes I wrote in preparation for my first doctor appointment (weeks before a CT scan revealed Tiny's friends), I described the sensation as "pressure."

During the passing weeks, the pressure increased. Wearing my normal clothes hurt. My shirts strangled me, dresses deprived me of precious O2, camisoles constricted my chest, my bras were too tight. I might as well have worn a corset all laced up, like that one variation of Snow White in which the queen gives her a cursed corset and the ribbons lace up so tight she can't breathe.



I often unclasped my bra to relieve the pressure, even if I was in public. Later, I gave up and stopped wearing a bra, which posed other problems. Both options led to embarrassment. Whatever. A girl's gotta do what's a girl's gotta do to breathe. (See below for my eventual solution to this conundrum.)

I also read that chest pain is a symptom of anemia. Considering I was moderately anemic throughout my chemoification, this seems a viable reason for my discomfort.

Once chemo started, heartburn affected me. I was resistant to accept the heartburn theory for a while. Heartburn is for old people. Not someone in her late 20's. It's difficult to accept that one's body is not as healthy or strong as one would like it to be, which I'm sure is true no matter one's age.

Another reason I resisted accepting that I had heartburn is because the pain I experienced wasn't a burning sensation. (Semantics cause so much trouble.) 
I personally think the term "burn" is misleading. Burning is fire and heat. Maybe some people experience this, just not me. I felt crushing chest pain. As if my heart had been transplanted with a sea urchin.


Um...minus the spikes.


Yeah. Something like that.

There were only a few times when I could say, "Oo! Yup, that's heart burn." Yucky stomach acidity.

My Solutions

—Prescription strength antacid. Worked like a charm! As soon as I started taking it daily*, the chest pains diminished. The only exception was a couple days during treatment #10 and #11 when my dietary choices upset my stomach. What can I say? I love pizza rolls! Bonus, around the time I started taking the antacid, the horrific mouth burning significantly decreased. Correlation or coincidence? I don't care as long as I could eat food with minimal pain! 
(*Initially I thought I only needed to take the antacid on chemo weekends. After consulting a pharmacist and my oncologist, both recommended taking it daily for maximum effectiveness until chemo ended.)

—Purchased new shirts and tank tops that were a size or two larger than I normally like to wear.

—As for the bra issue, I had to make my own. That's right. I made my own bra. Nothing in the market or on the Internet matched what I needed (believe me, I looked). Sports bras were too tight. Bra extenders were still too tight. Camisoles with so-called built-in bras were too thin. As I mentioned, going braless posed other problems because I can get rather, uh, perky. (Walking from 100+ degree heat into a chilly, air conditioned store will do that to a person.) I needed something loose, easy to slip on, and with enough padding to prevent embarrassing situations. So I bought an inexpensive wireless bra, did some cutting and sewing, and voilá! The final creation was the most comfortable, magical, marvelous bra I've ever worn/made/owned. It's not perfect, but it worked. Six months later, I still enjoy wearing it from time to time.

Further Reading

Every person is different and their experiences will vary from mine. Always discuss your particular symptoms and concerns with your doctor.

Tuesday, April 7, 2015

My Long Overdue Post-Chemo Post

Hair has been growing. Energy levels are back to normal. Life goes on!

Nearly six months have passed since my final chemo treatment. Wow! Time has flown.

I've been meaning to post updates about life post-cancer. Because, it's a bit weird. My oncologist informed me that it was natural to have anxiety as a cancer survivor, and yeah there are days when the possibility of a relapse scares me and I wonder about my future. Ultimately, I can't worry about it, because the future isn't written yet. Gotta keep living!

I still need check-ups every three months to make sure everything is hunky dory, both in terms of watching out for long-lasting chemo side effects (of which I have none so far) and potential relapse (also none so far). Luckily for me, Hodgkin's lymphoma has a low relapse rate and most HL patients are cured with first-line chemotherapy. All of the statistics are in my favor. Hurrah!

As for other updates...

First, the sad news: back in November, my oncologist told me she would be relocating. I'm happy for her, moving on with her career and all. Sad for me. I could not have asked for a better oncologist to help me through the tumultuous journey. I was able to see her one last time before she moved in December.

The good news, also back in November my port was explanted!

I'm grateful the device made receiving medications easier, however I am super glad it is gone. If I had kept it in, I would have had to revisit the infusion center once a month to get it flushed to keep the catheter clean and clear. Considering how accessing it each time made me nauseous—with or without chemo—because of my reaction to the saline and/or heparin, removing it was the best. It also signified an end to my cancer adventure.

On Friday, November 21, my Aunt Debbie accompanied me to the hospital. We arrived at 6:55am and left around 10:30am. The procedure itself lasted just over an hour.

I have learned to be more vocal about my needs and desires, so prior to the procedure I had a few questions/requests:

1) Can I be more conscious than sedated during the procedure, like last time during the implant

Answer: Yes! Woohoo!

2A) Can I keep the port? 

Answer: No, because it is a biohazard. =(

2B) Can I take a picture with the port? 

Answer: YES! (see below)

3) Can anything be done about the nasty little scar* from when the port was first implanted?

Answer: The doc wasn't sure. Usually they make a second incision or something. He said he would take it into consideration and see what he could do.

*Side note: Funny story. Sooort of. When the port was implanted, there was a little mix-up about when it would be okay to remove the surgical glue. The take-home instructions claimed it would fall off on its own within seven days. On day eight, the glue was still stuck in place so I removed it, which apparently was too soon (the nurse practitioner later told me fourteen days was the ideal wait length; um...that would have been nice to include in the instructions). When I removed the glue it was obvious the incision had not quite healed and I had to return to the interventional radiology department so the nurse practitioner could tape it with surgical strips. This technique was not very effective and the scar healed weird. Every time I looked at it, it reminded me of a slug.


Returning to my explant procedure story, as requested I was mostly awake, although the nurse increased my sedative at one point because she said she noticed I was wincing. All in all, I remember about half of the procedure: the set up, an x-ray, a blue drape, the prep, the stinging lidocaine injection...

A different doctor performed the explant, not the doc I met during pre-op. New doc and I had a great chat during the procedure. Unfortunately, I don't remember most of it. Apparently she gave me a lot of great life advice. Guess I'll have to fill in the gaps with my imagination!

Bonus: She removed the scar tissue as requested! Yay! The new scar is longer and just as wide as the old scar, but it looks a lot cleaner and less slug-like. I'm satisfied with it.

Me + Port
Yellow bruise a few days later.
The bottom line is the new scar.
The top line was more bruising.

Those are all the updates I have for now. I hope more will be forthcoming, but I make no guarantees.


My Nephew Remembers

Back in mid-January, my 3-year-old nephew and I were watching Guardians of the Galaxy at his house. In the opening scene, a young Star-Lord/Peter Quill visits his dying mother. When the scene showed her, my nephew pointed to the TV screen and exclaimed, "Manda! That's like you!" How observant.

Meredith Quill, Galaxy of the Guardians, Source

For the record, at the time, my hair looked like this:

Jump ahead to the first week of February. I have several apps on my phone to entertain my nephew. One of these is a hair salon in which you select a picture of yourself (or anyone) and create outrageous hairstyles: wash, dry, cut, buzz, grow, curl, straighten, color, add bows and hats, etc.

For example, I gave my nephew this make-over:

When it was his turn, my nephew took a lot of time styling my hair. He sat quietly and focused intently while I chatted with my sister. After several minutes, he tapped me on the shoulder and proudly showed me his creation:

At least it's better than Aunt Gollum.