So... the last 3 months were fun-filled with one emergency visit, two hospitalizations, three infections and antibiotic courses and countless weeks of nausea/vomiting/diarrhea. First the doctors blamed it on the clinical trial they put me on. Well, the CT scan showed that not only the tumor grew - so off the trial I go - but there are new metastasis forming up. Healing tango? Dancing? What are you talking about? I can walk about two blocks, after which I need to stop and catch my breath. On the days I don't go to the hospital my daily movements are between bedroom, kitchen and couch.

How I'm spending my December Pt.2

Saturday: I'm out of hospital. Start developing pains in lower abdomen. Vomit.
Sunday-Monday: Nothing memorable
Tuesday: Go back to hospital to do blood tests. Apparently no bleeding (good), but kidney function suddenly turns for the worse. Vomit again.
Wednesday: They put a liter of IV saline trying to "wash out" the kidneys.
Thursday: Another blood test, kidney function is even worse. A procedure is in order. Due to reasons I don't understand, if done as an outpatient, it can only be scheduled a week in advance, while if admitted to the hospital, it could be done tomorrow. I "volunteer" to be admitted. Meanwhile, I mention the abdominal and back pains and the NP suggests I get a slow-release fentanyl pain patch. I've been complaining about back pains for over a year, no one ever mentioned this to me before!
Friday: My urologist shows up and starts with "Well, you got two options..." My interest spikes, as the procedure seemed to be the only logical choice. "You can do nothing and die from kidney failure, or you can undergo this procedure". He wasn't joking! Of course, I sign up for the procedure, drugged, poked and wake up with another hole in my body and a new tube sticking out of it.
Saturday-Sunday: blood pressure is up, they try to get it down, find the drug that works, then take me off it for reasons I still don't understand.
So here I am on a Sunday night - haven't been at my own place for the last two weeks, weak and taking enormous amounts of morphine-based painkillers.

How I'm spending my December

Tuesday: I'm supposed to start a clinical trial next week. As part of getting onto it, I undergo a CT scan. Have to drink radioactive barium contrast solution, that messes up your digestion for hours.
Wednesday: I try a new soup from ABP. By the end of the day my whole GI track is moving like a drunk sailor. What's going out of me has a strange dark black color, I blame it on the yesterday's barium and today's soup.
Thursday: At tango, I dance two songs and literally run out of breath. Have to stop and sit down. My back starts hurting, I ask somebody for a painkiller, joking that it's "that time of the month" for me. Stupid
Friday: I'm getting home, walking up from Harvard Sq station to the bus stop. At halfway have to stop for 5 minutes to catch my breath, unable to move. Blame myself for not using the elevator.
Saturday: I walk up to the 2nd floor and run out of breath. Spend most of the day laying down on the couch while my son is playing around me.
Sunday: I feel better, we go out, at night I go out to tango. Have to dance one tanda - sit out two, but it kind of works.
Monday: Day -1, I have to go do a blood test. Come back, spend the rest of the day on the couch with a laptop.

And here the fun begins!

Monday night: my oncologist calls me - the test shows hematocrit dropped so much it indicates about a liter of blood lost. I realize the black stuff on Wednesday might not have been soup. She tells me to get to the ER immediately, which I do, munching on a banana on the way.
The ER folks are wonderful - within minutes of admittance I'm propped up, the port is accessed, another IV site is created, the tests are done and they start the blood transfusion. Two bags and they let me sleep.
Tuesday: Somebody tells me GI will probably want to do a colonoscopy and will probably want me to drink the gut-cleansing prep. In the meanwhile, I'm not to eat anything, sustaining on just an IV bag of dextrose solution.
Tuesday late afternoon: finally a GI doc shows up, says he'll do a scope tomorrow. No prep to drink, since I'm pretty clean as it is. Clear liquids only, nothing by mouth after midnight.
Wednesday - no food, no water. That Monday banana now seems pretty good. Finally, around 3PM they finally bring me to GI area. Colonoscopy finds nothing in the large intestine. Finally, I can eat! By the end of the night hematocrit drops again. Another transfusion.
Thursday - wasting my time in the hospital, finally the docs come with a new plan. They will do another test, coming from the mouth through the stomach into the small intestine. If they find the source of the bleeding, the radiologist can burn it shut with his magic rays. I realize that either with the bleeding or with the radiation treatment I am not going to go on the clinical trial. The test is scheduled for Friday, nothing by mouth after midnight again.
Friday - Fasting most of the day, finally a test. I ask the GI doc why didn't he do this test on Wednesday right after the unresultful colonoscopy. Well, he shrugs, we didn't think of it right away. Of course, the test reveals nothing.
Saturday - I'm finally out of hospital. Kicked out of the clinical trial, still with a potential to bleed, not knowing what will happen next.

TL;DR version:

• Carpe diem
• ER folks are heroes
• GI docs - not so much
• ABP soups suck!

What is a difference between 2.5..3 and 5 cm? One would think it's pretty negligible, what's a couple centimeters? But when it's your tumor dimensions you understand that the volume actually increased fivefold and that's a good enough reason for your oncologist to stop chemo. Sometimes I wish I didn't understand mathematics...

I'm a failure... not!

Health - first, I'm a failure. I failed a clinical trial, so that the drugs with the cool names of GDC-0973 and GDC-0941, while giving me acne, diarrhea and nausea, were not able to cure me. Well, then we tried something conventional unconventionally... According to the current ASCO guidelines, cetuximab does not work on KRAS-mutated tumors, period, end of story. Of course, cetuximab is expensive, so profit-driven insurance companies won't pay for the treatment that shouldn't work. However, thanks to Mr.Romney's CommonwealthCare and this one publication my oncologist and I got hope that my codon 13-mutated tumor might actually respond. And it did! My marker went down by the factor of 3x.

I'm super happy and took a week off chemo to celebrate. First, I played in the Boston Tango Jam. The next day ¡O, gnat! had a big concert And now I'm in beautiful Holyoke attending workshops with the wonderful Nick and Diana. Mark your calendars for April 1st! ¡O, gnat! will be playing a huge concert at Boston Alternative Milonga!

Inbetween days

While the tumor marker is up, it is not up significantly.
Nothing new visible on the PET/CT scan.
The doctors are giving me 2 more months of treatment-free frolicking until the new test, so I can stop worrying about cancer too much and prepare for our "untango" performance on October 21/22 (you heard it here first! mark your calendars, it's going to be nothing less than wonderful!)

Venceremos

Grand total five tumors removed
Three major surgeries and two minor ones
Three long chemoradiation treatments
Two systemic chemotherapies, which caused numbness in fingers and toes and hair loss
One life that made a complete change
Lots of small stuff like staph infection, blood transfusion, etc.
These fucking tumors keep coming!

But we shall overcome. Moar radiation will kill it. It should, so it will, right?


Hey Romale, no pasarán
Hey Chavale, Non, rien de rien
Hey, venceremos, все равно мы победим!

http://www.youtube.com/watch?v=JA0FEIqhYiM

Quick update

Off Aleve, on my way to actually having a proper crown on my poor tooth.
Why do I need a permanent crown? Nothing is permanent. I got bad results from the latest scan, the tumors seem to be growing.

I didn't really know her.
I don't know what color her hair was -- she was wearing a headwrap to cover her baldness.
I don't know what color her skin was -- the disease sucked the blood from her, so her skin appeared pale and paper-thin.
I don't know what body she had -- if she ever had any fat, it was all long gone by the time we met.
I do know she was the nicest, most gracious lady I ever met. She would always answer to my "How are you?" with "Not bad", though it clearly was a lie. She would suffer, but always manage to produce a faint smile on her face.
Last time we met she said goodbye to everybody and headed for the door. She was struggling with her steps, but didn't ask for help since she didn't want to inconvenience anybody. I offered her my hand, and she reluctantly accepted it, though she was trying not to put much of her weight on me. She was telling me how the new chemo she started managed to push her platelet count down to the fourties. I told her to stay away from sharp and prickly objects. Her ride arrived, she said "Thank you" and that was the last time I saw her.
Yesterday I was looking for her but she wasn't there. Later her husband walked in and started talking. I could hear bits "she was fond of this place; she said people here were the best" and thought "why is he speaking of her in the past tense? did something happen?" Unfortunately, he said yes, she passed away. Rest in peace, Marina! Or, as we say in Belarusian, "сьветлая памяць!"

Treasuring the little things

Having a continuous-flow fluorouracil pump seriously restricts your abilities and you learn to treasure the little things. Like taking a shower. At least M hospital's protocol is to disconnect the pump on Fridays and reconnect on Mondays, giving almost 3 days of unobstructed enjoyment. At the B hospital where I was treated before they took the words "continuous flow" seriously, replacing the battery/chemo bag every week but never ever disconnecting. For over a month I had to stick to baths.

Radiating to Captain Beefheart

The radiology folks at the M hospital have Pandora radio going. They asked what I would like to hear while being treated and out of the blue I asked for Captain Beefheart. Getting irradiated to Abba Zaba is an interesting experience...

Healing Tango

I am an Argentine tango dancer. I am a cancer survivor. Tango will make me cancer-free. Step by step, paso a paso. With each ocho, each cruzada, each boleo, each arrastre , and even, I dare say, with each gancho, cancer will be eradicated from my body, one malignant cell after another. Here's to HEALING TANGO!

Whatever happens, there's always hope. Never say never, or as the Hungarian actress and singer Judit Hernádi sang, "Sohase mondd".