Tag Archives: patient stories

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There has been increasing interest in my cancer posts from several folks. To make navigation easier, I have subcategorized the archives of these posts in the order in which I originally posted them. They can be found under the categories to the right.

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Decompression


Today marks four months since my last radiation treatment. Wow, I just can’t believe that much time has passed. I still have a radiation tan (wonder how long that will take to fade), and the skin in that area still itches. I am supposed to keep out of the sun for a year and not put anything, creams or medicines, on the irradiated area unless the doctor approves. I still have pain where the incision scars are, but not as bad as before. I still struggle with lymphedema, but I am able to do more, and I am much stronger. As a matter of fact, I was able to do a three-mile, rough-terrain hike three weeks in a row! Yea!

Although the tamoxifen still wreaks havoc with my moods and appetite (I have lost somewhere between 15 and 20 pounds, and I wasn’t even remotely overweight to begin with), I feel myself moving towards a semblance of normalcy. I suppose the most annoying side effect I have from the tamoxifen is insomnia. Most nights I have to take something to fall asleep and stay asleep. Even with sleeping pills, I don’t fall asleep before 10:30 (usually more like midnight) and I automatically wake up at 6:30. I go, go, go all week, then suddenly crash and can do nothing but sleep for one or two days. Then the cycle starts again.

On the bright side, the claustrophobic feeling I had of being trapped in my own mind and body has dissipated. The knots in my stomach have loosened. The wheels in the brain have slowed and spin at a calmer (but still brisk) pace. Part of this may be because I finally found a therapist who has experience with cancer patients. As I mentioned in another post, after my nightmare experience with another counselor, I went to my oncologist to see if he could recommend someone. It turns out the practice had just started a program to meet patients’ and their families’ emotional needs. The doctors realized that there was just too much for them to address, so they brought in a social worker to fill the void. This social worker is the exact opposite of the inept counselor I saw previously. She has extensive experience with cancer patients and has had cancer herself. She knows. She understands. THAT makes a huge difference. When I get overly stressed, just the thought that I will have someone to talk to allows me to decompress.

So while I am still recovering from my treatments, my outlook on life is beginning to brighten. I have a tenuous hold on happiness most days, and for now that’s enough. That’s progress.

©2010 frayedges and http://www.frayedges.wordpress.com


Don’ts and Do’s of Dealing with a Cancer Patient


Now that I am finally returning to some sort of normal, now that the cancer is gone (and hopefully won’t return), I thought I would offer a little advice to those of you out there who know someone with cancer. It can be awkward, and you may not know what to do or what to say to the cancer patient. So I compiled this very short list of don’ts and do’s from the patient’s perspective.

1. DON’T tell them to think positively, that it will better their chances of survival. Why? Well, for starters, it’s just not true (See this American Psychological Association Report). And I know you don’t realize this, but you are effectively placing the blame on the cancer patient: “If you die, it’s because you didn’t have a positive attitude.” You don’t really see THAT perspective until YOU’RE the cancer patient. Being told to be positive can be frustrating and annoying, and definitely adds stress to an already stressful situation (I’m not the only patient who feels this way).

DO be supportive. Cancer has incredible psychological effects. I can’t even express what it does to you. It eats away at you literally and figuratively. Sometimes the cancer patient just needs a friend to be there. Check up on them, even if they say they are fine. Offer help with tasks you think they might not be able to do. The cancer patient might not come to you when they need help because they might not want to be a burden.

2. DON’T try to “cure” the patient. I was about to scream from the numerous emails and advice I received on so-called cancer cures. Following some of that advice would have been deadly. I don’t understand how people can believe everything they read. You may be well intentioned, but you are not helping the patient by bombarding them with unsubstantiated claims. This is LIFE and DEATH folks. Anecdotes just won’t do.

A couple of seriously bad offenders:
Johns Hopkins Cancer Update email hoax

This one is so dangerous that Johns Hopkins Cancer Center published a rebuttal:
Johns Hopkins Cancer Center Rebuttal to the above Cancer Update email

and then there’s the ol’ baking soda “cure:”
Baking Soda Cancer Cure

This is a nice list of cancer myths.

DO let them know about any current SCIENTIFICALLY SUBSTANTIATED studies you think they might like- but be careful here. Not all patients will want this information, so be very sure before you offer it.

3. DON’T try to offer treatment advice. Every cancer is different and treatments are tailored to the patient depending on many different factors. This is a very difficult, individual decision made between a patient and his or her doctor.

DO be supportive with the patient’s treatment decisions-even if you don’t agree with them. That’s a hard one, especially if the decision is no treatment.

4. DON’T assume the patient is all better once the treatments are finished. This is when we need you the most. During treatment we have the support of the doctors and nurses, but once treatment stops, we suddenly find we are very alone. The greatest chance that the cancer will come back is within the first two years, and even after the first two years there is a chance it will come back or we’ll get another type of cancer. This is all we think about. This has been my most difficult time.

DO just be there. That’s all we really want.

©2010 frayedges and http://www.frayedges.wordpress.com


Part VIII: Sorting It Out


The anger has left. It didn’t happen gradually. It just disappeared. I woke up one morning this week and realized I was not upset. And then I realized I had slept all night without the help of a sleeping pill. Oh, don’t get me wrong- I still think about cancer constantly. It consumes my day and leaves me restless, still unable to focus. But it is manageable, today anyway. I have crossed a rocky shore and can now feel the soft sand between my toes. I can relax.

I have tried to figure out what I have done differently. I suppose one change is that I am no longer hiding. For some reason I have difficulty understanding or explaining, I have kept my cancer a secret for the most part. Oh yes, I have written about it, and I have told a select few about it (mostly by email), but I was embarrassed and avoided disclosing this information to people I deal with every day. When I learned of my diagnosis, I told my immediate supervisor because I knew I would need to take a day or two off (haha, a day or two! I was so naive!). But I didn’t tell my main boss. I told no one else at work. It was only after my surgery that I finally came clean, when I realized that the strain of hiding it from my employer would be too great, that I would need to rearrange my schedule a bit to accommodate treatments. Then I told one or two others at work, but the rest I dodged as skillfully as possible. I wanted no one to know. This has taken its toll on me.

My first foray into the public world was through a writing group. I brought the manuscript of my cancer experience for feedback, and it was nerve wracking. I don’t know what I expected, but what I got was positive feedback on my writing and compassion for my experience. I survived exposure.

Then I told a friend that I was falling to pieces, couldn’t get a grip on my reality. He knew about my cancer, had been there the whole time during my treatment, but he was surprised because, as usual, I was hiding my pain and confusion so well. He mentioned that hiding might not be the best approach since others pick up on the subtleties of behavior, and if there is no rational explanation for the way a person is acting, others become confused and possibly assign meaning to those behaviors, and not necessarily positive.  So I stepped back and had to wonder, what do other acquaintances think about me? It is unfortunate, but the majority of people I know in this town I met after my diagnosis. Yet they know nothing about what I have been going through. So did they think I was odd, unfriendly, unstable as I stumbled through the world of medicine and sickness, blind to activities beyond its borders? I could beat myself up for that, but a person is only capable of doing what they are capable of at the moment. For me, my mechanism for dealing was to try to do it on my own, in secret. I can say that hasn’t worked too well, but I needed to find that out on my own. And I needed to come to accept that my life will not necessarily be defined by cancer from now on, but it will be marked by it. How can something that is so much a part of you not be revealed?

I decided to quit hiding. I didn’t run out and make a public announcement, but I did tell a few more people when the time was appropriate. Then I started this blog. Perhaps no one will read this, but the fact that it is out there on the internet makes it public. That has a psychological effect that is cathartic (as another friend described it) in nature. It is an avenue of healing, and it gives me an outlet for my thoughts. It also gives me a purpose- to write. For this I can focus.

So will my mood last? Who knows? There is a little part of me that waits apprehensively for the other shoe to drop, but for the moment I seem to be ok. I will still talk to my oncologist about support groups or other resources, just in case. But I will take my mood at face value and enjoy it. After all, as I have been so brutally reminded, I only have today.

©2010 frayedges and http://www.frayedges.wordpress.com


Incompetence!


Image: m_bartosch / FreeDigitalPhotos.net

This weekend marks two months since my last radiation treatment. My mood see-saws from bad to good, hour to hour. I decided last week that, in an effort to avoid antidepressants, I would see a therapist. The problem is that my insurance doesn’t cover mental health. I guess they don’t think that’s important. I found a local church that has therapists who work on a sliding fee schedule. Fine. I made an appointment.

On the day of the appointment, I sat and filled out the intake paperwork, all 500 pages. One question asked, “Have you experienced any changes in your life.” I almost giggled, then got to work listing them: fled a violent cartel town in Mexico, was homeless (had to live in my sister’s family room with my mom, four cats, and a dog) and jobless/underemployed for nearly a year, ultimately only finding three part-time jobs, my mother began having unexplained seizures that left her further disabled so she needed more care, two of my cats died 10 days apart, and I was diagnosed with cancer.

Are those changes enough?

When I entered the therapist’s office, I immediately asked her if she had experience counseling cancer patients. You would think that would be a sufficient hint. She hesitated then said that she had had a few patients with cancer. Hesitation, hmmm…I was losing confidence in her, but decided to give her a chance.
She looked over my paperwork.
“When did you finish your treatment?”
“My last day of radiation was April 19.”
“Did you have chemo?”
“No.”
“Have you ever seen those movies where the cancer patient is sick and vomiting?”
“Yes.”
“Is that from the chemo or the radiation?”
“Usually it’s just the chemo that does that.”

She nods her head and looks over my paperwork. She asks me questions about my childhood. Of course, what do you expect? That’s what they teach you in therapy school, right? Don’t focus on the pressing issue the patient asks you about when she walks in the door. The patient only thinks her problem is cancer. It really all goes back to her childhood- you know, abuse, alcoholic father, poverty, suicidal tendencies, all that kind of stuff. I answer her questions with growing anger.

“You had difficulty finding a job?”
“Yes.”
“Did you try the job center?”
“Yes, in two counties.”
“Did you check their list of job search websites? They have some good sources.”
“Yes, and I have even better sources.” My heart is beginning to quicken and my face feels flushed.
“Have you considered job skills training?” Oops! Too far. The dam breaks.

“Look,” I say, my voice rising considerably. “I’m going to be frank here because I have nothing to lose. I do not need job counseling! MY PROBLEM WITH FINDING WORK IS NOT MY SKILLS, IT’S THE ECONOMY! I did not spend thousands of dollars on acquiring a master’s degree just so I could go down to the skills center to learn to type 40 words a minute and become a minimum-wage receptionist! That is what I did BEFORE my education! And I earn enough in my jobs, which are in my chosen profession, to meet all my needs! My problem is not employment! IT IS ANGER! I have done everything I was supposed to, everything, and still my life is screwed! I am pissed! I am pissed at God! He’s a bastard! I am pissed at life!”

She nodded. “We get two types of people here, those who want to work on their problems and those who want to talk. It seems you need to talk.”
“I need to do something with my anger, and I am trying not to take pills to fix it,” I reply.
“What have you done?”
“I volunteer, I stay busy with work, I go out with friends, I exercise, I go for walks, I write.”
“Have you tried to chase the negative thoughts away, think about the positive things in life?” She hands me a book on coping with feelings.
“Look,” I say, “I am not at the point at the moment to see all the bright, rosy aspects of life. I have had so much counseling in my life that I could write this book. The problem at the moment is having the ability to apply it.”
“Well here’s a packet I compiled on anger management. There are specific techniques that you can apply to help you with your anger.”

I look at the papers and inwardly sigh. Doesn’t she realize that you can’t use these techniques until you’ve actually addressed what is causing the anger?

“Our time is up.”

I make another appointment with her, knowing that I will call and cancel later. I evaluate the experience and it occurs to me that she honed in on those items that were concrete and easy to tackle- job counseling and anger management techniques. She side-stepped the important changes like cartel towns and cancer. I am frustrated and spinning my wheels.

The next day I call my oncologist to make an appointment. I will consider the antidepressants. But before I take anything, I will ask him where I can go to talk with someone who understands. Maybe he can recommend a support group or a therapist who really does know something about dealing with cancer.

©2010 frayedges and http://www.frayedges.wordpress.com


Part VI: On Being Fine


I am physically better these days, stronger and able to do more. The only on-going side effect two months after my radiation therapy is that the irradiated skin is itchy and numb on the surface. I started the tamoxifen on the first of May and it gave me all the opposite side effects of what most people get: I am hyper, not tired, and have insomnia. I don’t feel like eating, so I’ve lost weight (all the nurses were telling me to stay active so I wouldn’t get fat on the drug like most women). While it’s true that the tamoxifen makes me nauseous, I also have these eating “issues” at the moment. I am not bulimic or anorexic, but I look at food and I don’t see something delicious. I see the poison that goes into and on the food. I have discovered that the makers of my favorite ice creams refuse to even consider using milk that does not have any added hormones (rBGH). This is the hormone that is directly linked to increasing the insulin-like growth factor-1 (IGF-1), which in turn increases (causes?) the chance of breast and colon cancers.

So I wonder what's in her milk?

Not only that, but it is a fact that cows that are fed this hormone have higher rates of infections and produce pus in their milk (which is why they are also fed antibiotics). Knowing that, when I see the ice cream I once loved I don’t see a creamy, delicious treat. I see pus. Then I get even more nauseous. The same with fruits and vegetables. I have always loved cherries, but they have more pesticides on them than most other fruits, so now I have no interest in them. This didn’t bother me before. I rolled my eyes at people who were into organic. Then I got cancer. It happened to me. Now perhaps I am going to the extreme the other way. So I eat the veggies from the organic farm, and I buy as much as I can organic, and those things I can eat, but I have no appetite for most other things. I suppose on the bright side, I am not eating any junk, only good stuff, but my gusto for dining has been destroyed.

I thought that when the treatments finished, life would get back to normal, but it hasn’t. I think about cancer every day and find myself crying at odd moments. I am angry all the time and I don’t know what to do with that. I cannot focus or sit still. The doctors suggested anti-depressants short term, but I don’t want to take more pills. Perhaps I will seek out those support groups after all. I am active, I continue to be involved in life, I try to move forward, but I wonder, when will I be fine?

©2010 frayedges and http://www.frayedges.wordpress.com


Part V: The Aftermath


I finished my radiation treatments last Monday. Tuesday, though, I didn’t actually know what to do with myself. For 36 days, seven weeks straight I went to get zapped at 9 am every morning- then nothing. It almost felt as though some kind of support had been yanked out from underneath me. Instead of feeling relieved, I felt lost and a bit depressed. By Wednesday I was coming around. Now I just have to wait for the side effects to go away. My skin got really dark and very painful during the radiation; then it started to peel off, and it felt better. I also get these really sharp, shooting pains in the irradiated area. I was told that any side effects might actually peak 7 to 10 days after the treatments stopped, so it might be a bit before I feel great.

The pain the radiation was giving me forced me to give up swimming for a while. I was going every Monday and Wednesday to a class, and I was really enjoying it. The water is very relaxing. The class I was attending met at the same time as the kids’ swim classes, so there were these squealing infants splashing in the water at one end of the pool while the instructor was yelling out moves to our class at the other end of the pool. There is a dome covering the pool that they put up for winter, and it really screws with the acoustics. So instead of hearing my teacher’s instructions, all I could ever hear was “Ring around the rosie, pocket full of posies, splashes, splashes, we all fall down!” followed by the giggles of babies being dunked into the water. It occurred to me that if an alien ship had landed at that place at that moment, they would have thought they hit a nest.

This week I managed to go to one of my swim classes, and now there are school-aged kids who swim at the same time. Problem with these guys is they are unpredictable. You never know if one of them is going to vomit in the pool, or do something stupid so they hurt themselves and the pool has to close down so the staff can clean up blood and other bodily fluids (it’s happened twice).

The good news is that my lymphedema has gone down now that the radiation treatments have stopped. Part of the reason I stopped swimming, aside from the pain, was that my oncologist told me that if I didn’t slow down, at least until after the radiation treatments, the lymphedema might never go away and I would be permanently disfigured. So I decided to cool it. Now I am adding activities back in, making sure I do everything possible to avoid swelling up like a balloon.

I am obsessed with the cost of my treatment. What the insurance doesn’t know is that I found the lump when I was unemployed with no insurance. I kept quiet as I desperately sought work, so I could buy insurance. To date, my insurance has been billed $68,343.36. The radiation treatments alone through April 2 total $29,062.43. I calculated, based on the average cost of treatment per day, that the insurance will be billed an additional $12,787.47 for the treatments from April 2 to April 19, my last day of treatment. That will bring my radiation total to $41,849.90 and the total cost of my cancer treatment to about $110,193.26, not including the tamoxifen I have to take for the next five years. My biggest fear is that my insurance will drop me or raise my rates so high that I can’t afford it. I open each envelope from the insurance company with dread, only to feel relief when I see that they have paid.

It is not cheap to get sick.

©2010 frayedges and http://www.frayedges.wordpress.com


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