06.17.2010
tired • sleepy • yawning • dragging • drowsy • lethargic • fatigued • worn out • squeezed out • used up • running on empty • zzzz • burned out • exhausted • épuisée • weary • bone tired • dog tired •drained • zonked • wasted • ready to drop • ready to collapse • bushed • beat up • beat down • lullaby me • pooped • tuckered • worn down • zzzzzzz • naptime • all the time •
• is this over yet? •
Tags: changes, daily life, fatigue, side-effects
Posted in Treatment | 4 Comments »
06.15.2010
Using social media through cancer treatment is exciting, gratifying, and, sometimes, it’s emotionally complex.
I have cancer friends from all over the world in my social networks, via Twitter and Facebook. Those of us who fall into treatment at the same time form special bonds, sharing the anxieties and unknowns of whatever we are facing next.
The closeness that grows between people who have never actually met face to face is, at times, astonishing.
One of my friends lives across the world in Germany. She has ALL, an aggressive form of leukemia. She started her treatment shortly after I did. Before her cancer, she had a rough life: abuse, rape, suicide of a close friend, a family that has effectively disowned her. Despite this adversity, she has an incredible sense of humor and wonderful spirit.
This is my friend Christina.
She and I make each other laugh at cancer.
Christina’s original chemo regimen stopped working a couple of months ago. She had to decide what to do. Her cancer was spreading rapidly. Her doctors offered her an experimental treatment, one that would put her already weakened heart in jeopardy. Although she had suffered horribly from her chemo, Christina decided to go ahead and continue with the treatment.
The chemo has been rough. It has made her sick and weakened her heart. She has not been able to adequately control the bone pain from her tumors because her heart could not take the stress of the medication. Last week, her doctors suggested she replace some heart valves in order to be able to continue with her treatment.
Because she has no family, I am the one Christina turns to when she comes to these crossroads. I am not afraid of talking plainly with her about these choices. I would never judge her if she felt she had enough, and I will also always support her if she wants to keep fighting the cancer against the odds.
She’s only 21.
So far, Christina wants to keep fighting. So she had her heart surgery today. She was, understandably, very scared. Her body is weak, her immunity is down. She has had to be revived twice before.
She gave the hospital my name as the person to contact if she should die. I, who have never met her face to face, am her next of kin.
I feel humbled by this situation. In our networks, there are people who are geographically much closer to her. I wanted one of them to be with her, to hold her hand, to be available physically in a way that I can’t through the phone or computer.
Christina hemmed and hawed and pushed us away. She did not tell us the name of her hospital. In fact, when I pressed her, she lied about it. I told another friend the false information, and we soon realized we were on a wild goose chase trying to find her. I wanted to know the hospital name because I was concerned that I would only hear from the hospital in the worst case situation. Other friends wanted to try to arrange to visit and meet with her. When we figured out what she had done, we all felt, at best, confused; at worst, deceived.
When I caught up with Christina online, I checked in with her about what had happened. She felt bad for lying but explained that she wanted to be alone:
I know how hard it is to ask for help. I am only learning it myself. Just today, as I came to terms with how bad my radiation fatigue is getting, I reluctantly drafted an apologetic email to my friends letting them know that I needed more help.
For Christina, she has had to do so much on her own in her life. She has had her heart broken many times by people who she should have been able to trust.
It’s hard to let yourself be vulnerable. It’s hard to let others take care of you, even when you have had a lot of practice at being loved. It may be hard for some people to understand, but I believe that the difficulty of being vulnerable was behind Christina’s deception.
I let her know how confused we all were:
It’s so hard to let people in.
Tags: coping, courage, essay, social media, support
Posted in Treatment | 5 Comments »
06.11.2010
My favorite tech Chris still has not had his baby. Which, selfishly, makes me happy, because I enjoy my banter with him. There is an art to having conversation that fits in and flows with the work of stepping in and out of the room to adjust the radiation machine and change the filters.
There are always two techs in the room. I know about five by now, and I usually get Chris and one of the other four. I know their names and have topics to chat with them about as well.
Today, a third person was in the room. She was clearly not a tech. Although she had a hospital badge, she was wearing a suit and heels, not scrubs and sneakers. I glanced over at her as Chris helped set my arm up in the brace. This involves me slipping out of the awkward hospital gown and putting my arm over my head.
Chris noticed my look and said, “Oh, that’s the physicist.”
“Hello, Physicist,” I said. “What’s your name and what are you doing here?”
She told me her name and that she was here to observe treatment set ups. As the techs worked to align me, rolling me this way and scooting me that way, I felt that burning sense of indignity that has been festering since my initial diagnostic appointments.
“Physicist, I am lying half naked on a table with no breasts. If you are going to be in the room and I don’t know you, please tell me your name when you come in and why you are here.”
She apologized, and I apologized back for being cranky.
The rest of the treatment, Chris and my bits of conversation amounted to me telling him how awful it was to be treated like a piece of meat. “I may be a cancer patient,” I said, “but I’m still a human being and this is my private body.”
“I think we just become kind of numb to it,” he said in one snippet.
“I appreciate that you are outspoken,” he said in another.
No wonder he’s my favorite tech.
Tags: awkwardness, body issues, coping, daily life, doctor-patient interaction, healthy people, identity loss, self-advocacy, talking, what to say
Posted in Treatment | 6 Comments »
06.09.2010
Come on, people! Keep me laughing. They say it’s the best medicine…
Here are the rules:
1. You come up with new lyrics to a known song. Your lyrics help us laugh at cancer or its treatment. (Ex: “All the Single Ladies” rewritten as “All the Chemo Ladies”)
2. You submit the lyrics to me by email before June 25, 2010. Please use the subject line “Contest.”
3. I will select winners from the entries and post them on my blog. If there are a lot of entries, I may post finalists for you to help me judge.
4. First place winner will get a ChemoBabe t-shirt. Second and third place winners will get other Babe Swag.
5. Entries must include (a) the name you want me to post on the website, (b) your mailing address, t-shirt size, and phone number & (c) a link to the song you are making fun of. (BTW I won’t give out or store any contact information — it’s just for swag delivery.)
Tags: contest, coping
Posted in Humor, Treatment, Wellness | 3 Comments »
