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.

Pre-procedure

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.

Source

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.

Post-procedure
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.

Cheerio!

My Chemo Course

Welcome to Café Chimio, where we serve the finest chimiothérapie cuisine!

Today our special is the ABVD full course chimio delight, a classic choice for our Hodgkin Lymphoma patrons. Each entrée is served with complementary nausea, vomiting, hair loss, mouth sores, and a low blood count which leads to fatigue and an increased risk of infection.

Patrons may experience all, some, or few side effects to varying degrees of intensity. Sorry, no substitutions can be made.

When you arrive, our host will escort you to a private recliner. One of our expert servers will access your port-a-cath and flush it with prepackaged saline syringes in preparation for your chemo treatment. Patrons with a sensitivity to the prepackaged saline may request hand-prepared syringes.

Our servers are happy to accommodate your needs. Do not hesitate to ask for anything, whether it be a warm blanket, a pillow, a plastic puke bag, a light snack or drink, or extra antiemetics. We encourage feedback, so please also report any worrying side effects or discomfort.

While you wait between each course, we will serve you a constant vintage Saline Drip.

For an appetizer you will begin with Emend. This delightful refreshment will ensure you enjoy your full chemo course without side effects like nausea or vomiting. We want our guests to enjoy their treatment while they stay with us.

A second appetizer is a blend of Zofran and Decadron, more antiemetics to ward off nausea and vomiting.

As a palate cleanser, you will receive Tylenol to avoid potential headaches caused by Zofran and some of our main courses. You'll be glad you added it!

Let the main courses begin!

Your first entrée will be Adriamycin, also known as doxorubicin. Some of our patrons affectionately call it "The Red Devil." A server will sit by your side for ten minutes and carefully push small increments through a syringe into your IV. This decadent drug is lightly seasoned with possible heart damage. One course is enough to make your hair fall out! It may also cause savory mouth sores. You may notice a distinct chemical smell or aftertaste. When you sense this, you know Adriamycin is working its wonders! Another marvelous feature is that within a few hours, during your next trip or two to our toilet amenities you will excrete pink or orange urine.

Next, you will be served Vinblastine, also delicately hand-pushed through a syringe in small increments over the course of five or so minutes. This zingy medication is sautéed with peripheral neuropathy that will make your fingers and toes tingle. Painstakingly layered with nervous system changes including sensation changes, muscle weakness and pain, loss of coordination, and jaw pain. Other attributes include constipation and/or diarrhea. A pinch of headaches and a dash of depression perfect the Vinblastine side effect medley.

The third course, Bleomycin is served over thirty minutes as an IV drip. Garnished with possible lung damage, patrons may notice coughing and shortness of breath. Topped with possible chills, fever, and shaking, which subside after forty-eight hours. Many patrons report their skin darkening—who needs to visit a tanning salon? Additional side effects such as itching, shaking, and skin rashes are whipped together to perfection. Although this drug does not contain peanuts or shellfish, a few guests have reported allergic reactions. Our servers are well-prepared and will be on the lookout for any nasty reactions.


The final course, Dacarbazine is slowly served over sixty minutes, also as an IV drip. Like the previous courses, this lovely chemical also causes nausea, vomiting, and a low blood cell count. Headaches, body aches, weakness, and sinus congestion are simmered together for a twenty-four-hour flu-like experience. Sprinkled with just the right amount of metallic aftertaste.



When your infusion is complete, our experts will flush your port-a-cath to ensure you are ready for your next visit.

Before you leave, please stop by the Pharmacie. Your maître d' can recommend a number of take-home antiemetics (in pill form) to ward off nausea in the days to come and, if needed, can prescribe stronger pain relievers and medications to reduce symptoms as they arise.

For lesser aches and pains, many over-the-counter remedies can help, such as Tylenol for headaches and moderate pain (avoid NSAIDs). Laxatives such as Senna and Colace can overcome constipation.

During your many visits to Café Chimio, your maître d' will frequently check with you to guarantee your satisfaction and to monitor any pesky, severe, and/or long-lasting side effects. 

Be sure to immediately report any severe effects to your maître d', including but not limited to a fever over 100.5 °F, abnormal bleeding, and unrelieved pain.

Source: UC Davis Comprehensive Cancer Center Chemo Class slide show

Bon appétit!

❧   ❧   ❧   ❧   ❧   ❧   ❧

Sources

• Notes my oncologist provided me during my first consultation
• Individual handouts about Adriamycin, Bleomycin, Vinblastine, and Dacarbazine provided by the UC Davis Comprehensive Cancer Center

Further Reading

LymphomaIngo.net: ABVD
RxList: Adriamycin
RxList: Bleomycin
RxList: Vinblastine
RxList: Dacarbazine

Disclaimer

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

I did not mention every side effect listed on the handouts and websites I consulted. Nor did I personally experience every side effect stated on this page. For example, I never developed mouth sores or a skin rash. I definitely experienced infection, fatigue, muscle aches, nausea. The peeing orange/pink thing is totally real with Adriamycin (makes one's urine smell extra bad, too. Blech). Some side effects I experienced weren't listed anywhere, such as the horrific mouth burning and overactive menstrual cycle. As for heart and lung damage, the odds are in my favor against those and so far so good. My oncologist will continue to monitor me in the years to come. 

You can read more about my personal side effect experiences through My Side Effects series. 

You can read about other ABVD side effects by clicking on the links above.

My Twelfth Chemo Costume: Katniss Everdeen

Twelfth and final chemo infusion. Yay!

Super strange. And SUPER EXCITING!!!

Also, not very eventful. No anticipatory nausea or vomiting, thank my Lucky Charms. Ditching prepackaged saline in favor of hand-prepped saline proved the biggest help. I still had a few minor bouts of nausea, took a decent nap during infusion time, slept most of the day when I got home, and my appetite is currently nil.

BUT I'M DONE!

Aaalmost, still have a couple weeks of side effects and fatigue to battle through. No biggie. Been there, done that.

Next week I'll have a PET scan to make sure the all nasty cancer cells are defeated, and hopefully soon thereafter I can officially announce that I am a survivor!

Much like the inspiration for my twelfth costume: 

Katniss Everdeen

Oops. Katniss is a better archer than I am.

That's okay. I've got my costumes.

My incredible infusion nurses: Cheri, Mary, Jayne, and Terri.

For Funzies:

BAMF Girls Club

(Other favorites include: episode 6, episode 8, episode 11, and episode 13)

A Bad Lip Reading of The Hunger Games

My First Chemo Costume: Time Warped

In keeping up with my out-of-order crazy tire swinging, here are some pictures and reflections from my first chemo treatment on May 8th. 

Wow, has the time swung by!

–   –   –   –   –   –   –   –   –   –

10:00 AM: Arrive at outpatient infusion center.

Only two days before my first infusion, I had my port placement surgery. Obviously my chest still felt incredibly bruised and sore from having been cut open and a small foreign object crammed inside it. 

I had not yet been able to get my prescription for lidocaine cream, which numbs the skin before a nurse jabs through it and the "soft top" (high grade medical plastic) septum with a needle to access the port. 

Source

Source

Add to my predicament a sharp fear of needles, and you've got a recipe for a hurricane of tears, which I did my best to hold back.

My nurse for the day, Cheri was amazing. She listened to my concerns and talked me through the procedure, per my request. As I braced myself for super intense pain— squeezing Mom's hand, closing eyes, tissue ready, big deep breaths, big deep breaths—Cheri accessed the port faster than a dart hitting a bullseye. 

Whoa. No tears at all. In fact, I distinctly remember thinking, "That was easier than getting a navel piercing." 

(Note: I have to give praise to all of the nurses at the infusion center. Cheri, Terri, Mary, and Jayne are exceptionally skilled at accessing those ports with precision and speed, which leads to minimal discomfort even when I haven't used the lidocaine cream.)

With the drama of needles and port access out of the way, my first infusion continued.

During the first hour while anti-nausea meds dripped into me, Cheri gave me and my mom a quick tutorial on each of the four chemo drugs I would receive (Adriamycin, Bleomycin  Vinblastine, and Dacarbazine) and their side effects. (Click here to read more about my chemo course.) 

Then, chemo-ification time came! Usually I receive the drugs out of ABVD order. It's more like AVDB or AVBD. The order doesn't matter, as long as it's the correct drug and the correct dosage.

Adriamycin and Vinblastine come in syringes and the nurses "push" each drug in small amounts into my IV. Bleomycin and Dacarbazine hang from the IV pole and are pumped through automatically.

Total chemo time:

Adriamycin: 10 minutes

Vinblastine: 5 minutes

Bleomycin: 30 minutes

Dacarbazine: 60 minutes

Nurse Cheri and the four chemicals she's about to infuse me with.

You will note a lack of costume. The advice I received was to "dress comfortably," and dress comfortably I did. The idea to dress in costume originated sometime near the end of my first treatment.

Almost done for the day! (Oh my goodness! I still had hair back then!)

2:00 PM: First infusion DONE!

I was surprised I felt as good as I did when I walked out of the infusion center. Mom and I went grocery shopping to pick up some grub for the weekend.

Afterwards, I celebrated my first successful chemo infusion by dressing up and nibbling on a piece of pie. Because everything is better with pie. And steampunk gear.

My Facebook friends might be familiar with this lovely photograph:

It's all smiles and silliness for a little while...

By 4:00 PM the chemo caught up with me and my body felt as if it had gone through a blender.

Yuck.

Just…yuck.

Yet I still tried to attend a small family gathering to celebrate my brother-in-law's birthday. This was the result:

I've used this pic before, but it captures the distress of chemo day.

My mom and I left the party early, and I sat in my shower for a solid thirty minutes letting warm water soothe me. I had an evening snack of fruits and veggies, and my body felt better. Lots of rest over the weekend also helped.

–   –   –   –   –   –   –   –   –   –

So, that was my first chemo experience. Of course, over the next two weeks there were a lot of side effects and gross days and ickiness that I'm glad are in the past.

I've adjusted over time and basically become a pro at it now.

Most chemo days have followed a similar pattern: wake up, apply lidocaine cream, rest/nap while getting infused, endure nausea, return home, sleep off the side effects the rest of the day and most of the weekend. Take pain relievers and warm showers as needed.

Also über important: Take anti-nausea meds on time.

It's weird to think I'm almost done, and also super relieving. The first treatment is rough because neither you nor your body knows what to expect, and it's only the beginning. Looking back is kind of empowering because Hell yeah, I did it!

Well, I've almost done it.

Only one more to go!

My Eleventh Chemo Costume: Kermit the Frog Princess

My penultimate chemo treatment! Only one more to go!

I love shopping at thrift stores for costume pieces.

A few months ago I happened to find this gorgeous evening gown for $10 and it happened to be a perfect fit. When I told the sales clerk I planned to use it as one of my chemo costumes, she gave me a 50% discount. Yup, that's a $5 gown right there!

As pretty as the dress is itself, I couldn't help adding a little twist.

So, without further ado, I present Kermit the Frog Princess!

This princess has only one wish: for a banjo ukulele.

Frog princesses don't wave. They flail enthusiastically!

As for updates, everything is going smoothly. Side effects have been less severe than they were in the beginning and middle of my journey. I think my body is adjusting. Nausea is still annoying, but at least this time my breakfast stayed down! YaaAaAAaay!

Mahna Mahna, my friends!

Just for kicks and giggles, leaps and ribbits, here is one of my favorite Muppet songs:

My Tenth Chemo Costume: Kaywinnet Lee Frye (a.k.a. Kaylee from "Firefly")

Mighty fine tenth shindig!

I'm not a big damn hero, but I aim to misbehave. 

Everything's shiny!

No power in the 'verse can stop me! 

My Ninth Chemo Costume: Capt'n Pink Beard, the Pirate!

Ahoy, me Hearties! Capt'n Pink Beard here!

Me birthday be next week and it corresponds with only the best holiday evarrrr!

INTERNATIONAL TALK LIKE A PIRATE DAY!
(September 19th each year, every year. Save the date.)

Capt'n Pink Beard and First Mate Jewels

All of ye buccaneers have less than one week to brush up on yer best pirate dialect. Links to tutorials are provided below.

Me 'n' the crew have finished nine leagues along our twelve-league quest for the Treasure de Rémission. It has been a veritable odyssey of epic proportions! (We shan't speak of the anticipatory seasickness.) 

In honor of this auspicious event, I present "Capt'n Pink Beard's Chantey."

So far we have survived with grace. And dignity. And pinktasticness!

Thar be only three more chemo adventures to go!

Methinks a little pirate jig be in order.

Link

Pirate Grammar Tutorials

Talk Like a Pirate: The Five A's (YouTube)
Talk Like a Pirate (YouTube)
Pirate Terms and Phrases

Other Pirate-y Links

Official Talk Like a Pirate Day Website
How–to: Make a Fake Beard
Lyrics and chords to "Capt'n Pink Beard's Chantey"

My Eighth Chemo Costume: Pretty in Steampunk

Wow! I can't believe I'm two-thirds done with chemo treatments. Hallelujah!

This treatment's costume theme: Steampunk! (Because I'll never tire of steampunk.)

My blood counts were, well not exactly "normal" per se, but decent enough to continue with chemo #8.

Despite taking anti-anxiety/anti-nausea meds prior to arriving at the infusion center, I still experienced anticipatory nausea and vomiting. Yup, it's a real thing that 29% and 11% of chemo patients experience, respectively. (I feel so lucky!) I'm glad I skipped breakfast, otherwise that blue, plastic barf bag would have been more full.

My nurse used a slightly different strategy when accessing my port this time. Whenever the nurses access my port they have to flush it out with saline. For a while I wondered if that incited—or at least exacerbated—my nausea. My nurse explained that some patients have a reaction to the saline when it comes in prepackaged syringes, which is what they had been using for me. This time she filled an empty syringe with saline from a bulk container and it made a difference. Less nausea this time!

While my two anti-nausea pre-meds were getting infused, I mustered up enough energy to take some photos.

I have to give a shoutout to my friend Stephanie F., who sent me the adorable beige skirt that served as the inspiration for my creation. The original skirt was too small. Of course, that didn't stop me from finding a way to fix it. 

One straight cut down the back, sew on a few extra inches of fabric, cover with a beautiful bustle. Easy peasy.

I made the mini top hat from cereal box cardboard, fabric, and ribbons. It's so cute! I love it!

Oops! Slipped! You know what they say when you fall...

Stand up and continue to be fabulous!!!

I also have to give a shoutout to my friend Christine F. who made the one-of-a-kind necklace I'm wearing. You can find more of Chris's creations through Punkenstein Jewelry (awesome name!)

After pictures, it was time for chemo. I sat back and meditated while the chemo worked its…well, I wouldn't call it "magic," but it's working. Only four more treatments to go!

Steam On!

How to make bustles:
Child's skirt with bustle (The inspiration for altering my skirt)
Neo Victorian Easy Bustle Tutorial
The Incredibly Easy Bustle Skirt

How to make a mini top hat:
Mini Top Hat Tutorial (My hat is a modified version of this pattern.)

My Seventh Chemo Costume: Doctor Who

Who else is super stoked for the Doctor Who series eight premiere? I am!!

In honor of one of my favorite doctors, I dressed up in my gender flipped Fourth Doctor costume and my sister, Christine dressed up as the Tenth Doctor.

But first, a quick note about yesterday's chemo treatment.

Christine and I spent eight hours at the infusion center yesterday. Normally an infusion only takes three to three-and-a-half hours. So why the extra time? Sadly, a TARDIS was not involved.

My oncologist called me on Wednesday to tell me that my Tuesday lab work was a bit alarming. 

Normal hemoglobin range balances between 12.0-16.0 g/dL, and anything below 9.0 or 8.0 is worrisome. You know hemoglobin, that important molecule in red blood cells that transports oxygen from lungs to body. My tests results came back at 7.7 g/dL. Yowzah! A lot of my other counts were down, too, including my red blood cell count. These low results made sense. As I mentioned in my posts about fatigue and my insane menstrual cycle, the past two weeks following treatment #6 I struggled to get out of bed for several days, and the days I could get out of bed I felt extremely weak.


The solution: a red blood cell transfusion.

Christine and I arrived at the infusion center on Thursday at 8:00 a.m. and by 8:30 a.m. precious blood cells began transfusing into my veins. It kind of weirded me out and unfortunately the anti-nausea/anti-anxiety med I took prior to my visit did not prevent me from regurgitating the mini donut I had for breakfast. Hello mini donut!

Four hours and two units of blood later, the pre-med and chemo infusion process began. No delaying chemo this time, which is just as well because I look forward to when this whole cancer ordeal is over.

Transfusion Snoozin'

I was extremely exhausted—mostly from having gotten very little and very poor quality sleep the night before—and slept the majority of the eight hours. However, I'm glad to report that the transfusion has worked wonders! I feel great compared to the aftermath of treatment #6. After chemo #6 I could barely move, barely stay awake, barely talk, barely eat. Chemo #7 has been a 150 degree improvement (the other 30 degrees are dedicated to some lingering nausea and tiredness). My appetite has increased and I stayed awake nearly all day Friday. Fantastic! 

There we are at the end of the day. We finally left the infusion center around 4:00 pm.

That is a 20½ foot-long Season 16/17/Shada Scarf replica, by the way (21 feet even with tassels). I crocheted it back in September/October for my 2013 Halloween costume.

Well, that's all.

Must Dash!

Doctor Who Scarf Patterns: http://www.doctorwhoscarf.com