Friday, January 14, 2011

Down

To celebrate the one-week anniversary of my first chemotherapy treatment, I visited the cancer center today to be weighed (down three pounds) and have my blood counts checked (also down).

To discuss these findings, and my experience and concerns about side effects, I was ushered into a space the size of a modest living room lined shoulder to shoulder with tired and sickly looking folks in reclining chairs, IV poles at their sides.

"I'm not getting chemo today," I said, hesitating at the door.

"I know," said the nurse's aide, pointing to a single chair at the end of the gauntlet. "You can sit there."

I tried to disregard the audience as my vitals were taken, as a nurse, sitting in an unoccupied chemo chair, told me I had only about 400 white blood cells in my entire body and detailed the precautions I need to take to avoid infection.

With a second nurse, I tried to discretely express my concerns about some digestive challenges I've been having. I was becoming increasingly uncomfortable, struggling to explain but not making much progress. "How do you know it's not your colitis?" she asked. With that word, I hit my limit. I'm not sure I know what colitis is, but whatever trouble I've had in the past has been remedied entirely by changes in diet. The problems I'm having now are most definitely chemo-related.

I don't know why I was so uncomfortable in that environment when I can say in this public forum without hesitation or hedging that I have inflammation from my mouth and nasal passages down through my entire digestive tract, including, in one instance, enough rectal bleeding that, though modest in the scheme of things, nonetheless caused me to feel alarm.

It must have something to do with the word colitis. I guess I just don't like that word.

Nor did I like that room, a room I did not know existed, I'll call it the Economy Class Chemo Lounge, where friends and family who might come along to lend support would have to stand at your feet, or wait in the hall.

There is another group chemo room, I've seen it, where there are acres of space between the chairs, a veritable lawn of white linoleum tile. Why is one room so spacious and this one so cramped? I have no idea.

"You know, I just realized, I don't feel comfortable talking about this in front of all these people," I told the nurse.

"I'm sorry," she said. But she did not offer another venue. And so, before long, I wrapped up the conversation and took my leave.

I cried for a long time in the car, gut-wracking sobs like I haven't had yet in all the time since my diagnosis, about myself but also about all those people in that room, alone with their books and magazines, how all of us are suffering and none of us know, not really, if this grueling treatment is actually going to work. I have a growing worry about my other breast. What if, after this hard six months is behind me, they find cancer in my other breast? Then what? And what about the bleeding, hell, call it colitis if you like, but what about it? What if it comes back worse next time around? What else could happen? I used to think that was a rhetorical question. Now I know it is not.

12 comments:

Anonymous said...

I don't know why they shoved you all into such a unhappy place...economics comes to mind. Most people are too apprehensive to speak up, don't know how to advocate for themselves and have no one to do it for them. Speak and speak loudly...the nurse was a useless, cold-hearted bitch IMO...I'm sorry you have to go through such indignities, sometimes the system is broken and change takes a person willing to speak...be BRAZEN, my friend!
Peace~Kerry

Anonymous said...

I would urge you, if you haven't already, to join a support group. Some chemo related side effects are treatable, others must be endured.

It's okay to ask for a private area to discuss sensitive topics. If there is not one available at the moment, ask if you can see the nurse later, or discuss it over the phone. Ask the scheduler when the least busy time of the day is for your appointments. I've worked at oncology offices with 20 patients crammed in a huge room and I didn't like it either, but it wasn't something the nurse has any control over. But some patients said they liked the big rooms, especially the ones with all day chemo treatments, because they could pass the time chatting with people who were going through the same thing.

I wish you all the best.

deborah lattimore said...

sister, you are going through the fire and it totally sucks. Your (wonderful) writing takes me right back to my cancer experience - the unfamiliar "otherness" of it all, the loss of privacy and control, the huge fear of the unknown, the realization of how completely dependent i suddenly was on so many people i didn't even know and technology i didn't understand, and, for me, the worst was that i thought i knew my body for 54 years, had never been sick, and suddenly i didn't know what was going to happen to my body anymore, even on an hour-by-hour basis going through treatment, much less my life. going through the fire was really hard - and incredibly enlightening once i got through it. i endured the indignities of crappy doctors, a jesus-freak nurse for chemo, hellacious experiences with my insurance provider. and on and on. it just sucks. on my blog i always write about how grateful i am to have had cancer because i seriously needed the wake-up call and it changed my life for the better, but nobody would have been able to convince me of that when i was going through chemo. i am not going to say to you what i hated people saying to me ("hang in there!" "you'll feel better in a few months!" "it could be so much worse!" "you're saving so much money on hair products!" "i'm praying for you!") and will only say i love your writing and i know you must be helping many other people by such honest and vivid description of your experience. i think you rock.

Anonymous said...

I am an oncology nurse and it sounds like what you are having is mucusitis. It is a common side effect of the red medicine you got. Does your doctor have a specific nurse that works with him/her? if you aren't sure just call and ask to speak to your doctor. You will be directed to that nurse. Mucusitis causes problems from the beginning of your GI tract(mouth) to the end (rectum) but there are some things that can help. Hope this info helps and sorry you had such a down day!

Kerri said...

Ugh, sorry for your crappy day. I had similar digestive mayhem after my first treatment, but it lessened over subsequent treatments. I've been shocked to find my body seeming to "get used to" chemo.

For me, bland soothing foods helped - oats, winter squash, applesauce, etc. And a strong probiotic every morning. Hope you're feeling better today.

Frenchie said...

I don't suppose I have anything helpful at all to say, but I am so sorry you are going through all of this. I am totally blown away by your strength through all of this.

Anonymous said...

I am sorry you felt it was such a bad experience and agree wholeheartedly with the oncology nurse who, as I feel, hate to see our patients suffer, but do the best we can in a situation where there are so many patients in your same position, wanting the same thing as you, privacy, compassion and help, that we are left to talk with them wherever we can. Next time make sure you tell the nurse immediately you are uncomfortable and hopefully she can arrange a place to talk with you.
As for you gut, you know it best but yes it does sound like mucositis. I agree with bland foods, less spice, and no acid foods or drinks. As I am sure you have been told, never hesitate to call your cancer center, even on a weekend.
I wish you peace...

r3 said...

I'm sorry. That is all.

Sam said...

My former stepdad suffered from colitis for >20yrs. He was treated w/ many drugs, including steroids. Finally he went to a natural medicine Chinese doctor that had him change his diet & he was "cured." That's the extent of my knowledge. I'm sorry that you had to deal with that nurse. You shouldn't be forced to talk about medical issues with an audience.

Sabrina said...

Amy, Sorry to hear about your experience. I think its always hard to speak up for yourself when trying to talk to doctors and nurses about your own health. It feel like we are automatically on the defensive - like we need to prove the validity of our concerns. I find it overwhelmingly tough to do.
On another note - have you read Louis Haye's You Can Heal Your Life? If not you need to go right now to amazon and order it! It will help you feel a little sense of control in your own healing process. The DVD is excellent as well!

Jamie said...

I am sorry to hear about your lack in privacy in wanting to discuss a private concern. It is also sad to hear the nurse was not more compationate and accomodating, especially since you were brave to speak up when so much of your energy is focused on getting well, not fighting the people who are supposed to help you. The nurse's response was very system centered and not patient or family centered. And while some embarrassing symptoms may be common for many people undergoing cancer treatment, it is not common place in your life. It is not your norm and the nurse should be more aware of that. I agree with other posters who have suggested that you follow up with a phone call to have your questions answered. You deserve that.

Kelly said...

I'm sorry that on top of all of this, you were made to feel that way.