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.
Click here to read My Tiny Tumor Adventure Part 1: A Diagnosis Story.
Click here to read My Tiny Tumor Adventure Part 3: Port Placement and Other Procedures.
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)
(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:
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.
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.
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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!
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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.
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.
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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.
Within minutes, boredom ensued.
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!
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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).
(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!
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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THE SHORT VERSION
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
