Archive for October, 2008

The doctor called and said all test results were normal.

I am waiting a couple of days to see if I feel better now that “check-up stress” is gone before flying off to Tulsa or Phoenix.

I did ask her about the asthma connection, and she didn’t reassure me, she just said yes, mm-hmm, she had read it.

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Waiting for test results is a bitch.

I have received phone calls from my oncologist’s office two to three days after each regular checkup with her, when I get my tumor marker test results, which have been normal. This time, I haven’t felt normal, and I haven’t had a call back yet. Tomorrow will be ten days since my exam. I finally called the social worker, after leaving two messages with the nurse and not hearing back. The social worker left me a message today saying my chart and results are on the doctor’s desk and she should call me tomorrow.

In the meantime, since I don’t feel “normal,” my imagination has gotten away with me again and when I wake up in the very small hours of the morning, as I have been every day, my headache, or my joint aches are more noticeable, or I think I have a little “squeezy” feeling in my heart — or is that a pain on my rib? — and I decided that I needed to go somewhere else to find out why I am still so tired, tired, tired, and feel so short of breath when I do anything. So at 4:45 a.m. I decided to get online and check out how to get an appointment at Mayos in Scottsdale, Arizona.

Noticing a link to “latest news on breast cancer,” I clicked that link only to discover a very discouraging report issued October 15 (two days after my oncologist visit) saying there is a “two-fold” increase in the risk of mets to the lungs in breast cancer patients with asthma. There was no going back to sleep after that, and besides, the puppy was awake by then. (That’s another story for elsewhere.)

In spite of the fact that I made a decision that between check-ups, I am going to live a “normal” life as a person WITHOUT cancer, and in spite of the fact that I didn’t obsess about it before my appointments this time, after a couple of days passed and I didn’t get a call with test results, the un- and sub- and all other consciousnesses began to take over, starting in the night when I needed to be sleeping. Between them and the puppy (I will write about that), I’m not getting good rest. Which equals more fatigue, which results in more anxiety about why I’m so god-dammed tired.

Not just tired — hurting, weak, wet noodle, joint cracking, falling down, can’t go up the stairs, too much bother to read a book, tired.

Now that the sun is up I am telling myself that I’m okay. I’m not sick. My cancer is gone and it is not going to come back.

But it would be easier if I had my test results on time, knew what they were, and had a chance to talk to the doctor about this new report.  I want her to say, “yes, I know the report, but it isn’t like it sounds, it’s like this. . . . .so don’t worry.”

I can get on a plane and go to Tulsa to Cancer Treatment Centers of America and have PET scans. My docs have said they’ve never ordered PET scans because they had no indication I needed one. The onc at Cancer Treatment Centers was very surprised about that. They would have routinely done these scans. My (former) naturopathic physician who worked for Cancer Treatment Centers said they did very good work but they used up people’s insurance because they ordered all kinds of tests and treatments.

I don’t know how a person is supposed to sort all of that out. I need some kind of statement from my docs about the asthma/ recurrence report. If that is even minimally reassuring, then I need to find out whether my onc thinks my primary is following all this, and my primary thinks my onc is. I feel myself fallllllllling through some cracks here.

And this is how my mind works while I’m waiting for test results when I’m not feeling up to par.

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We’re having a meeting this Thursday to talk about what resources are available in our small town for cancer patients and survivors, and what we can do to raise money for some that aren’t accessible.

I’ve talked about my own struggle to find information when I was first diagnosed and heading toward treatment: Did people get chemo treatments in the local hospital? If not, where were the treatment centers? How far away were they? How did people get there?

What about radiation treatment centers? How did people get to them and home five days a week for five or six weeks?

Did people travel to the treatment centers each day, how did they afford that, did they feel well enough to drive themselves, and, if not, what were their other options? Were there places to stay, and programs to help with the cost? Did the public transportation (county express bus) go there, and how much did that cost? Were there programs to help with that expense?

How about support groups? Counselors experienced in working with cancer patients? Where did I find information on nutrition and supplements during treatment? What if I needed help in my home during treatment – who could I call?

I tried finding this information through my local hospital before my treatment. I was told there wasn’t any list or directory or one source for all of this information. A nurse eventually made several phone calls to gather information which she then passed along to me. I called all the hospitals in the little towns in this part of the state (the size of Massachusetts with the population of Boulder, Colorado), asked if there was a list or directory of local resources for cancer patients, and was met with the same response at each place: they were not even sure who to pass my call through to.

After my surgery, and after my radiation treatment, when I was back home and getting back to work, I went to the local hospital to get my blood work done and everyone who worked for the hospital and clinic facility was wearing a pink t-shirt for breast cancer awareness month. So I thought I’d do an experiment. I asked if they had a list of resources for breast cancer patients. They did not, and they were not sure to have me talk to. So much for pink shirt day.

Our little rural county with a total population of 10,000 in three small towns began hosting an American Cancer Society Relay for Life Event three years ago. The first year they raised over $60,000; the second year they raised over $70,000, and the third year they raised over $80,000. People who were heading up the event were related to cancer patients and survivors and they said some of the money was used to help patients with their transportation and lodging expenses when they had treatment.

It was like pulling teeth and I got treated like the enemy, but what I discovered was that none of the money raised in the Relay for Life stays in the community as cash dollars that are available to help people with the expenses of accessing treatment. Yet for the next relay in July, our local paper featured the story of a cancer survivor who said that ACS would have helped pay for her expenses to stay out of town during treatment, but she didn’t have to use their help because she stayed with family.

What is available is Road to Recovery, a program of volunteers who sign on to drive people to appointments but who are not reimbursed for their expenses. What is available for lodging is the reduced rate that ACS negotiates with some hotels near treatment centers. (As do the hospitals.)

A couple of weeks ago I actually had a representative from ACS call me to ask if I knew of any help for a woman who needed to get to an appointment out of town that week.

Local cancer survivors are meeting this week with representatives from American Cancer Society, their Relay for Life reps, and local organizations and other interested people to finally address this issue.

Where does the money we raise go? Is there any way to access it for treatment-related transportation and lodging costs? If not, is there another way we can continue to raise money for Relay for Life and raise money that we can keep in a local fund for this purpose? How about other local events? Can we expand the support for them in order to raise the money for treatment access?

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