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Posts Tagged ‘breast cancer survivors’

Since I accidentally discovered the Mayo Clinic report that breast cancer survivors with asthma have a two-fold risk of mets to the lung, I have been to Arizona and discovered that my asthma didn’t bother me as much while I was there. I didn’t, though, go to Mayo’s to followup.  Why? My insurance company said I hadn’t met the deductible yet this year and I would have to pay for a pulmonologist visit and pulmonary function tests out of my pocket.

Haven’t met my deductible yet this year?! A year of visits with specialists, biopsies, mammograms, ultrasound tests, ob-gyn visits and tests, genetic testing, and all that medicine.  I found out none of my co-pays or payments for those things counted toward my deductible OR my “out of pocket maximum” this year.

Other reasons I didn’t have the testing yet: I changed insurance companies before the end of the year, and my tumor marker tests were good and even in the range for a person who has never smoked, even though I did until about 8 years ago. And my new primary physician was gone all November having surgery.

When I was in Arizona I felt like I could breathe WELL and DEEPLY, and didn’t need to use the inhaler I took along.

I got a flu shot the day after flying home in a sardine can and then was sick for 10 days with a cold and sinus infection.  Being back indoors with a forced air furnace was a drag on my spirits as well as my asthma.  Then it was Thanksgiving and I had company, and now here we are in December and I haven’t gone back to Arizona or talked to the doctors again about the asthma connection, but I started taking my steroid inhaler twice a day.

The reports say that breast cancer patients/ survivors who use steroid inhalers to keep their asthma under control have a better outcome.

My next three-month checkup is in early January.  I’m determined to follow through with this to keep this from being an issue. I don’t want lung mets because I couldn’t control asthma.

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Finding someone to talk to about facing our breast cancer diagnosis is no longer such a challenge.

Living Beyond Breast Cancer has trained volunteers for confidential calls. From their newsletter:

Do you want to talk to a woman who understands what you are facing? Consider calling the LBBC Survivors’ Helpline, a national, toll-free telephone service staffed by trained volunteers affected by breast cancer. Helpline volunteers are dedicated to offering guidance, information and peer support in a confidential setting. A woman affected by breast cancer will answer the phone live on Tuesdays from 11:00 am to 3:00 pm ET. At any other time, leave a message and a volunteer will return your call within 24 hours. Our personalized matching service connects you with women in similar circumstances. Spanish-speaking Helpline volunteers are available.

I previously wrote about another organization that has volunteers available all of the time:

Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

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Breast Cancer Network of Strength (formerly Y-Me) has a new online counseling program.

YourShoes has the country’s only 24/7 toll-free hotline staffed exclusively by trained peer counselors who are breast cancer survivors. These peer counselors are experienced in handling all types of questions related to breast cancer, and can talk with you about your feelings and concerns. They will make sure your questions are answered and give you the information you need in plain language. Call YourShoes at 800-221-2141.

Peer counselors can match you with a survivor who had a similar diagnosis or life experiences. You’ll be able to talk with someone who really understands your concerns–a woman or man who has been there.

I had a hard time finding someone to listen when I needed to talk about my deepest fears – would the cancer come back? Was I going to be able to keep working? What would happen if I couldn’t work, which would also mean I wouldn’t have health insurance? The next three years before I turned 65 and became eligible for Medicare were the years that the risk of recurrence would be highest. Other fears were that I would have to keep working at a job I didn’t like during the next few years, which might be my last.  Was this how I was going to have to spend my last years? But how could I change jobs now?

Other things that seemed critically important to me at the time were that I was having what I called, “cancer dreams” and I needed to talk about them – with someone who took them seriously. And I didn’t want to go through having this disease without being able to understand something of what it meant in my life.

I checked with my insurance company to see if they paid for counseling and was told they did only if I went to the local community mental health programs, so chronically underfunded and marginally staffed that their services were usually restricted to crisis response, drug and alcohol evaluations and other court ordered interventions.  Not where I expected to find a Jungian analyst or dreamwork therapist.

Eventually, I made an appointment to talk to a private therapist and spent $60 to fill the car with gas and drive out of town to her office, and paid her $80 for an hour of her time, during which we chatted about some of the women we both knew, discussed my cancer history, and then she asked me if I wanted to come back.  Not having ever been to a therapist before, I asked if she could tell me what we might accomplish if I returned, and I expected that she would describe the therapeutic process as she practiced it.  Instead, she said that would be up to me.

Maybe she thought I knew what I was doing. Or knew something about therapy. I think I should have gone to someone who regularly worked with cancer survivors. My mistake. That I made primarily because I tried to go to someone I could see in a 150 mile round trip or less, instead of the 300-mile round trip it would be to the city.

The other reason I didn’t feel that anything “happened” during that appointment was that I had just made the decision to accept a job offer, and leave the work that I didn’t think I could keep doing. This was such a huge relief, and had been such a hard decision to make (don’t know why now) that I just didn’t feel I had anything bothering me that I needed to talk about. That was just timing.

The same questions still exist: I have a birthday this week, and it will now be two years instead of three before I am old enough to get Medicare, another two years that I have to stay healthy enough to work in order to keep my health insurance — which costs $1,005 per month.  I went to a town hall meeting on what we could do to address the health care crisis, and the first comment from a man in our rural neck of the woods was that we should all take more personal responsibility.  I took some personal responsibility by not killing him on the spot.

It will be one more year that I am a cancer survivor. It will be one more year during that first 5 years after diagnosis that my chance of recurrence is highest.

As the three-month checkups that come back NED (“no evidence of disease”) the question of what will happen if I can’t work gets pushed to the back of my mind and I can practice living life without waking up every morning and thinking about cancer.

So I have never really talked to anyone about these things. I quit having what I called “cancer dreams.” I no longer feel like I have to understand immediately what this all means in my life.  But I also don’t want to get complacent and forget to ponder that. I still do not want to have had this disease without understanding how it has affected my life and what that means.

When I get anxious, I put on walking shoes and get out of the house as soon as I can and walk and breathe until I’m better.

I don’t get online to read breast cancer news and updates like I used to. It has been a couple of months this time.

I was glad to find information about the YourShoes program.  We can call any time of the day or night to talk to a trained peer counselor who is a breast cancer survivor.

Get more information about this program here.

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