Tuesday, September 30, 2014

My Tiny Tumor Adventure Part 2: A Cancer Staging Story

Ahh! I meant to write this months ago. Then got side tracked (chemo and fatigue and all). So here is a long overdue post.

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Getting diagnosed with cancer is only one part of the process towards healing and whatnot. The next steps include meeting with an oncologist, getting the cancer staged, and determining an appropriate course of treatment. This, of course, all happened months ago for me.
Quick Recap

On April 30th, my ENT informed me I had Hodgkin Lymphoma. He ordered a couple of staging tests so that I could be ahead of the game for my oncology consultation scheduled for May 8th. When I made this appointment, I also asked the Cancer Center to put me on a waiting list should an earlier appointment become available.

The adventure now continues (short version at end of post):

Thursday, May 1
(Literally, the next day) 

10:00 am: Got a call from the Cancer Center. They had a cancellation and wanted to know if I could come in that day at 2pm. Yes! After making some quick arrangements, my dad and sister, Michelle were able to go with me. My mom wanted to be there, but was stuck at work.

2:00pm: Sitting in the exam room was trip-py. OMG. I have cancer. Everything kept getting more and more real.

2:30pm: From the moment my oncologist walked in the room with a smile, I loved her. She's an assistant professor, likes working with lymphomas, explains things perfectly, and is extremely friendly and optimistic. 

During the consolation, she told us about:

  • Lymphoma 
    • a cancer of the white blood cells 
  • The chemo regimen I would be receiving 
    • ABVD (Adriamycin, Bleomycin, Vinblastine, Dacarbazine)
    • once every two weeks
    • six cycles of two treatments each
    • twelve treatments total  
  • What tests I would need 
    • PET scan (to stage the cancer)
    • Bone marrow aspiration and biopsy (to stage the cancer)
    • More blood work
    • Echocardiogram (because Adriamycin can cause heart damage)
    • Pulmonary function test (because Bleomycin can cause lung damage)
Fun times!

I anticipated a lot of the information my oncologist provided (I do my research). About halfway through the consultation I started revealing what I already knew, mostly to confirm what I had read. For example, before my oncologist mentioned anything about a port-a-cath, I asked if I would need one implanted in my chest to administer chemo and limit vein and skin damage. She confirmed I would, and mentioned other options. The port seemed the best option.

Overall, the consultation went extremely well. She also mentioned a clinical trial for Stage III and IV HL patients and I told her I’d be willing to participate, depending on my staging results.



Silly moment of the appointment: While I sat on the exam table, my oncologist asked me to hold my arms up so she could check my lymph nodes and I announced, "I'm an airplane!" She laughed and appreciated my joke. She later told me she lucked out on getting an excellent patient. Woot!


3:30pm: As my sister drove us home, I silently wondered what else the universe could throw at me.

6:00pm: The universe answered. My car refused to start. My life turned from surreal to absurd. At least all the places my car decided to fail, it was in my sister’s driveway. Silver lining?

Friday, May 2

Looong day. Mom accompanied me.

8:00 am: Six-hour fast officially started to prep for PET scan. Technically hadn't eaten since 2am. Only water allowed.

9:00 am: Called AAA for towing services.

9:30 am: My oncologist called and said she could perform the bone marrow biopsy that day, as in within the next couple of hours.

10:00 am: Dropped car off at mechanic. Mom and I skedaddled downtown to the medical campus.

11:30 am: Bone marrow aspiration and biopsy. Prior to the procedure, my oncologist correctly guessed that I had researched the procedure and watched a YouTube video. She knows me well! She assured me it would not be that bad. She was right. Not a picnic, but not nearly as bad as I anticipated. Highlight for details: Every time I go through a procedure, my strategy to reduce anxiety is to ask my doctor or nurse to talk me through each step. (No mindless, "distracting" chitchat. Stay focused.) My oncologist explained each part of the procedure perfectly. She also checked to make sure my mom, who was also in the room, was okay. Usually I like to remain silent, but this time I broke my own rule and chatted occasionally about the procedure (focus!). I lay on my stomach on a table with a few pillows to support my head and shoulders. My left, back hipbone was the official biopsy site. First came the lidocaine injection. Stung like a scorpion! (Or so I imagine; I’ve never been stung by a scorpion.) My oncologist injected my hip several times, and each was less painful than the previous one. At one point I felt like a needle was stuck in me, but my oncologist assured me there was not. Weird. Once the lidocaine numbed my back, the harvesting began. I felt a lot of pressure as my oncologist manually cored out a sliver of my bone. This lasted for several minutes. Then came the aspiration—acquiring bone marrow. The whole time I mentally prepared for a surge of excruciating pain. Never happened. Maybe a pinch? My oncologist even had to reinsert the needle at one point. If I ever had to, I could endure this test again. My oncologist is amazing! I thanked her for doing a great job. She said if she had at least one patient out of one hundred who was grateful, then her job was worth it.

Afterwards, I asked if I could see the bone marrow and bone fragment. Super cool.

12:00 pm: Procedure over. Biopsy site (left back hipbone) ached for rest of day. Like moderate menstrual cramps. 
Also felt woozy. Probably a combo of losing bone marrow and having no food for several hours. PET scan was still two hours away. At least I could have water. Mmmm. Water. 


My oncologist said I could rest in the procedure room as long as I needed. While I recuperated, I asked to speak with the clinical trial coordinator. She chatted with us and went over information about the trial. Although my mom was concerned about the idea of my participation, I was completely fascinated.

1:00 pm: Scheduled several future appointments, such as the echocardiogram, pulmonary function test, and port-a-cath implant.

1:30 pm: Lab work. More blood drawn. Like, a lot of blood. It's okay. I don't need it.

2:15 pm: Arrive for PET scan. Mom had to stay in waiting room. Radioactive sugar injected intravenously. (Cancer cells apparently have a sweet tooth…er, membrane. Anyway, they gobble up sugar, and if it’s radioactive sugar the PET scanner will detect where the gluttonous little cancer cells are congregating.) 
One hour required rest to allow the cancer cells to feast. No visitors allowed. Not allowed to read or sketch or play games on phone or do anything except lie down, which I was more than happy to do. Blankets and pillows provided. 
Within minutes, boredom ensued. 


So much boring! 

And no clock to tell if time was passing. Ahh!

3:45-ish pm: PET scan. Finally! Had to stay still the entire time. I asked if I could close my eyes and the technician asked if I was nervous. Nope. Just exhausted. While I was in the middle of the machine I opened my eyes and was glad to learn I am not claustrophobic. Then I shut my eyes again because so tired!


4:15 pm: Done with tests for the day! Yay! 

4:30 pm: Mechanic called. Car fixed and ready to be picked up. Double yay!

4:45 pm: My oncologist called to let me know that only the lymph nodes above my diaphragm were affected, which meant my cancer was a Stage II, ergo I was not eligible for the clinical trial, much to Mom’s relief.
(Although I don’t remember exactly when I received confirmation about the official stage of my cancer, I do know after all the test results came in I was Stage IIA. Four affected lymph node groups, with a total of six tiny tumors, not including the original Tiny). 

5:00 pm: Had dinner with Mom. Monkey on a tire swing metaphor is born.

6:00 pm: Returned home for R&R. Back ached for the rest of the evening. And the following days. Yeouch! 

That's all for Part 2! Stay tuned for the final installment in which Amanda get her port-a-cath implanted, first chemo treatment, and more diagnostic tests! (You know, whenever I get around to writing it.)

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On May 1st, I met my oncologist (whom I absolutely admire and adore!) and we began staging the lymphoma. After a bone marrow biopsy, PET scan, and more blood work, we learned my lymphoma was Stage IIA.

Further Reading

Saturday, September 27, 2014

Tuesday, September 16, 2014

My Balding Pattern

I've noticed a curious coincidence.

Every time a nephew is born...

with Braden, December 2011

with Colton, September 2014

Aunt Manda goes bald!

(Michelle, stop having kids! My hair can't take it! Or have a daughter.)

Sunday, September 14, 2014

My (Now) 3-Year-Old Nephew and I Worked Things Out

Several months ago I posted about how my then-two-year-old nephew was mad at me because his Aunt Manda had changed. She had weird hair. She would rather sit on the sofa than play chase. Not fair!

The good news:

We get along better now!

Silly Faces!
Manda + nephews!

He likes my bald head. He has helped his mom shave my hair multiple times. He also likes giving me head rubs.

We play a modified version of chase. I pretend to be a ghost and slowly "float" around while he pretends to be a Ghost Buster or whatever and runs circles around me, the kitchen, and the living room.

We play with stickers and Legos. We watch movies together. And make popcorn! (He knows exactly where to find the popcorn in my kitchen. Every. Single. Time.)

We browsed through my costume collection and dressed up as pirates. He has tried on all of my wigs. 

We got matching Avenger temporary tattoos. He is the Hulk, and he assigned me Iron Man.

We made a volcano together. 

Baking soda + Expired apple cider vinegar = Fun Fun Fun!

I always spare a little energy to tickle him. He tickles right back!

Saturday, September 13, 2014

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!
(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 RĂ©mission. 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.

Cpt'n Pink Beard's Chemo Jig on Make A Gif

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"

Thursday, September 11, 2014

My Side Effects: Bone Pain



Every two weeks, twenty four hours after each chemo infusion, I have the pleasure of injecting myself with Neulasta (a.k.a. pegfilgrastim), a drug that stimulates white blood cell growth. My oncologist didn't want to take any chances after my extremely low neutrophil count sent me to the hospital in May.

Since starting Neulasta, my white blood cell counts (WBC) have been up up up! Normal WBC ranges from 4.5–11 k/mm3. My WBC have been approx. 12, 13, 16, 19. (I asked my oncologist how high was too high and she assured me my levels are perfectly fine.) My counts dropped to 12 following my unstoppable period. Then, prior to chemos #8 and #9 my WBC dropped to 9-ish, which weirded me out because they seemed so low—and that weirded me out because 9 is totally normal!

Because my bones have to work extra hard to produce lots of and lots of white blood cells, this leads to another annoying little side effect:

Bone Pain

Source: Bringing Up Baby

Normally, the pain isn't too bad. A dull ache deep inside my bones. An irritation akin to a growing pain. A twinge here and there. A bruise-like tenderness sans discoloration.

The first pains manifested in my elbow.


Then in my fingers, 


followed by my toes. (Toe knuckles aching = strange sensation)


More recently I've felt it in my upper arms and legs.


In my lower arms, usually near my wrists.


In the top and sides of my skull.


In my shoulder blades.


My entire back, for that matter.


My oncologist says the back pain is most likely a result of the increased white blood cell production. Although I had intense back pain one week after chemo #1, several days before my hospital excursion and several weeks before I started Neulasta. Personally, I think the back pain is a mix of all the drugs blazing through my body.

As uncomfortable as the bone pains are, I'm grateful they don't all throb at once! The pains alternate around my skeletal structure. Like osteo roulette.


My Solutions

Usually the pain is dull enough that I can endure it without intervention.

Massaging the aching area helps temporarily. So does performing stretch exercises.

A warm shower also does wonders. Or swimming in my back yard pool, weather and personal energy levels permitting.

Medication is another option: over-the-counter for smaller aches (Tylenol preferred, avoid NSAIDs) and prescription strength for when the pain becomes too intense/bothersome to think about anything else. The prescription drugs always lead to more side effects, like dizziness and impaired judgement (no driving until the effects wear off), so I only resort to them when I'm desperate for relief (and feel like staying home for a while).

Further Reading

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

Sunday, September 7, 2014

My Side Effects: Back Aches

For several days my back will sorta feel like

Sometimes the pain comes a few days after chemo.


Sometimes a week after chemo.


Sometimes whenever it darn well feels like it.


No matter when it creeps up,




My Solutions:





Further Reading

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