Sometimes it just isn't easy

Tuesday, in the afternoon while sitting at the computer, I had one of those sharp, knife like pains on my left side, somewhat like I used to for the first several years after my mastectomy, only this time, the pain didn't go away. It is now a tightness and it hurts when I breathe deeply.

Rats. I took ibuprofen to see if it would work on the muscle. Today, Thursday, I decided I had better call my oncologist and find out if I should see him or my D.O. (my regular doc).

I got my physicians assistant who said that I couldn't get in to see my oncologist until Tuesday. If I couldn't get an earlier appointment with my D.O., then I should call her and she'd book me one then. I asked her to tell me which side was the cancer in my ribs so I could tell my DO with more authority. She said that it was definitely in my left side and probably in my right as well. Darn. I was hoping this was a muscle pull, or verification that I am out of shape.

This is sort of bumming me out....well, that's not quite the word for it, I guess I am concerned. I will say, however, that this whole experience has been different than my earlier two battles. This one, I find myself asking myself all the time whether I should join a group, buy a sewing machine or whatever. I mean, what's the point if I am just going to leave a mess shortly because I'm going to die?

Hmm. Thinking back, I do remember being in "The Fabric Place" in Cromwell, Connecticut asking myself if I should buy any more than a quarter of a yard of fabric because I might not make it. I suppose it is the same, it's just that I've been out so long that I've forgotten all those feelings of fear and uncertainty. I must say, however, I'm not pleased with how fast this is seeming to move.

I was talking to another friend who also has a life-threatening illness. She chided me and told me to stop thinking like that...and again said that those family members who had thought negatively did not have good outcomes. Forgive me, but I find that this is a burden. I can't always push it aside. Not that I dwell always on it, but I am taking steps to make sure that some things are in order....like I'm having a garage sale this weekend and trying to sell some of the fabric which I no longer have an interest in. Like the fabrics I got to make my daughter a little jacket...when she was 7. Gorgeous corduroys, funny cat prints I was going to make her a quilt with, some fabric I was going to make tea caddy's with, other fabrics I was going to make something for my sister out of.....I'm just overwhelmed with the amount of stuff, and it is time to move it on.

Am I being morose? Not really. If I don't die from this, then I'll have a neater, cleaner space. If I do, well, then, I'm not going to be burdening my family with the dreck and dross. But I still find it a little difficult to balance the concept that I will only get better if I don't think I'm going to die. Let's put it this way...I am going to die, I just don't know when, and this "little problem" is scaring the bejabbers out of me, but I'd be a pretty unrealistic person, or at least one who isn't exactly looking at reality if I didn't think that this might be the final battle. Heck, it might be...the final battle for the cancer cells. I just wish that someone would hurry up and get me on something that works.

Cures and treatment

The other day, I wrote about the argument that my neighbors were having about prevention vs. cure. Quite frankly, I think we need to have both at present because we aren't moving ahead on either front in very swift time. At least that's how it feels to me.

For a long time, I have supported the Susan G. Komen Foundation. When I lived in Connecticut, I ran or walked in every race except for the first year they held it. I raised as much money as I could because I believed in the work that they did.

One of the things that the Komen Foundation does is keeps a significant portion of the money raised in the community, in the community. Much of it goes to provide free mammograms for those who can't afford it. The organization also works hard to educate and serve women in groups who are largely missed, or have higher mortality rates. Breast cancer, for a variety of reasons, is often diagnosed late in the game among African Americans and Latinas and the Komen Foundation is recruiting women from these groups to speak to their "sisters" and help them understand that cancer, if detected early, can be cured, or at least isn't a death sentence.

Currently, the Komen Foundation is working on a petition for elected officials to sign a Breast Cancer Bill of Rights. It is as follows:

Breast Cancer Bill of Rights

Every woman deserves access to timely and affordable high-quality breast health care but not every woman has it. As a breast cancer advocate, I pledge to support the Breast Cancer Bill of Rights and its ten tenets:

1. EARLY DETECTION: Every woman has a right to access breast cancer screening tools that may save her life.
   
2. FINANCIAL STABILITY: Women who are diagnosed with breast cancer have a right to fight the disease without fear of bankruptcy.
   
3. ACCESS: Breast cancer patients and survivors have a right to health coverage.
   
4. TIMELY CARE: Every woman who has an abnormal mammogram has a right to a diagnosis and treatment, if needed, without delay.
   
5. HIGH QUALITY: Every woman has a right to high quality care, no matter where she seeks medical services.
   
6. STRONG SAFETY NET: Uninsured women have a right to a strong breast health care safety net.
   
7. RECONSTRUCTION: Breast cancer survivors have a right to insurance coverage for full mastectomy care, including reconstruction.
   
8. CLINICAL TRIALS: Breast cancer patients who participate in a clinical trial have a right to coverage for routine health care costs.
   
9. PATIENT EDUCATION: Every woman has a right to make informed choices and take control of her own health.
   
10. INNOVATION: All Americans have a right to a government that invests adequately in innovative cancer research.
    

I promise to protect our newly acquired rights in the Patient Protections and Affordable Care Act and keep fighting until the entire Breast Cancer Bill of Rights is enshrined in law and extended to all women.

You can sign up for the petition here. Find out more about the Susan G. Komen Foundation here.

Two branches of attack are better than one, and one is better than none.

Prevention

About a month ago, my husband told me of a deep (and heated) discussion that my two neighbors had gotten into after my husband and one of the neighbors had ridden in the Peletonia, a fund raising bike ride for cancer research. One of the neighbors is the county health commissioner. The other neighbor teaches chemistry and physics at an area high school. The county commissioner felt that less funds should go for cancer research (the the eye toward finding a cure) and more for prevention; whereas the other neighbor wanted research to find a cure.

I was flabbergasted. Prevention? Then I started thinking more about it. Both make absolute sense, and certainly, the health commissioner's viewpoint is absolutely understandable, even if he himself is a prostate cancer survivor.

The Army of Women takes the viewpoint that we have spent billions of dollars trying to cure breast cancer, yet we don't know what causes it. If we discover what causes it, then we can stop it before it starts. Makes sense doesn't it? I'd rather than no one go down the road I've been going on. In addition, if we knew more about what causes it, then doesn't it follow that a cure wouldn't be too far behind?

To that end, the Army of Women connects researchers with study candidates through the internet. Usually, recruitment for people to participate in studies takes years. Through the efforts of the Army of Women, researchers have been able to find their participants in 48 hours. Cool, huh?

The salient points of the Army of Women:

• The Love/Avon Army of Women (AOW) is a unique program of the Dr. Susan Love Research Foundation, a 501 (c) 3 non-profit breast cancer research organization. The program is funded through a grant from the Avon Foundation for Women. The AOW provides an opportunity for men and women to take part in breast cancer research studies aimed at determining the causes of breast cancer – and how to prevent it. The AOW is a groundbreaking initiative that connects breast cancer researchers via the internet with women who are willing to participate in a wide variety of research studies. The goal of the Army of Women is to recruit ONE MILLION MEN AND WOMEN of all ages and ethnicities, including breast cancer survivors and those who have never had breast cancer.

• Men are able to sign up for the Army of Women.

· Make sure that women know they are signing up to be added to the Army of Women database to hear about research projects – signing up for the Army of Women does NOT sign them up for a study yet.

· The Army of Women Research Studies are prevention based, not clinical trials.

· Participants must be 18 and older – but we need ALL ethnicities – ALL ages, we need healthy women, women with cancer and women who are survivors.

There is no cost. They aren't raising money. Participants can be asked to fill out a questionaire, or to give blood samples (at no cost to them), it all depends on the particular study.

Join at www.army of women.org

Then, invite a friend. I'd rather that we have an Army of people preventing cancer larger than the army of people who have been touched by cancer.....however, I think both are important. Take this step today. I did and I have participated in two of their studies, and I hope that I am eligible for more.

New Place

Today I went to the new Cancer Care treatment center in Kettering for my monthly Faslodex injection. This facility is occupied by the Dayton Physician's Oncology and Hematology Office, and possibly others. It's my oncologist's new location.

It's far larger than the facility they were in previously. Larger waiting room, larger treatment rooms and more private examination rooms. I arrived at just before 9 am and was amazed at the number of people who were there. It made me think back to all of the treatment rooms I've been in over the last 16+ years. In the 11 years that I was in New Haven, the Hospital of St. Raphael's McGivney Cancer center grew by leaps and bounds too.

Cancer treatment has changed over the years. Instead of being there for long treatments, many patients are treated on an outpatient basis. Like me, some people come only for blood tests and quick injections. The needs have changed.

Of course, when you see large rooms full of people in a cancer center, it can be alarming. However, you have to remember that it doesn't necessarily mean that more people are getting cancer (although I personally think that they are), it does mean that people are living longer with cancer. It is becoming a chronic illness that one can live with.

I was also reminded of how nice and welcoming the people at this facility is versus where I used to go. Same doctor, but the atmosphere and general attitude toward patients, or at least toward this one patient, is entirely different. Once again, I urge you, if you're not happy with something about your treatment, look around....see what you can change. A different office made the whole difference to me.

Finding New Ways In

Hmm... So in the last week, I have heard of two new possibilities for treatment. It will be interesting to see if I qualify for either one of them....that is to say IF my injections are not working. One of them fools the immune system into working harder on destroying the cancer cells by splicing cancer cells into a virus (interestingly an equine encephalitis virus....so hopefully that doesn't make one into a horses posterior). I guess part of the problem is that the body's defense mechanisms don't recognize that cancer cells are foreign and should be destroyed.

The other method, or so I am told....I didn't read about this one, is using the individual's cancer cells and studying them applying various treatments to find the best one....This sounds extremely expensive as it is an individualized treatment.

Individualized treatments have long been recognized as a method which will provide the best outcomes for the cancer patient, but it is one which takes longer to identify and it is less profitable....it isn't a mass produced treatment (like the current drugs) but specifically designed for each person. We all know that treatments are money driven, so this one will probably not be available for most of us.

Interesting things...Hopefully this or one of the other many treatments developed in the last 5 years will work for me. In the mean time, I get to have another Faslodex treatment on Monday.

To Be or not to Be?

Sometimes the outpouring from people can be overwhelming. Sometimes what they say can be hard to take.

For instance, one of my husband's relatives called this summer and asked if they could come down and visit in August. I took a deep breath. This summer is a very busy one for me, not just because of the cancer, but because my daughter a high school senior this year and we had to do the college visits, her senior pictures (which she wanted some in my garden), work around taking our yearly trip to Connecticut, and visiting my parents who are ailing.

I was somewhat taken aback as we've lived in Ohio now for 5 years. Only one family member from my husband's side has ever visited. Only a few friends have as this is considered a "fly over state"--why would you ever want to go there? When we visited them in Connecticut, I started to speak to them about their plans on coming down.

"Oh, well, we only wanted to visit you to see you while you were still you. Since you're here, we can wait to come down for Meg's graduation." Translation: we wanted to see you before you died.

Thanks a lot. I was really taken aback. It was an unthinking way of putting it. You might think that, but please don't say that to my face.

On the one hand, I am not sure how I think about it when people say "You're going to make it, I just know you are." Part of me wants to say "how do you know?" On the other hand, wanting to "see me while I am still me" is a little too dark for me.

So...I guess I want it two ways....I want people to recognize that there is a possibility that I won't survive this, but on the other hand, I want them to think positive thoughts for me.

I don't have the faintest clue how this is going to turn out. I do know though that I am not going to sit around. I'm trying to make some good decisions and take care of somethings now in the event that I don't make it....and I have to admit that some of those things will make life much easier even if I do make it.

And yes, I did buy a new quilt pattern and some fabric the other day. I'm not planning to make an exit anytime soon, and I am going to live my life as I have it with as much grace and panache as I can.

Through a Lense Darkly

I hadn't heard from my oncologist. Usually he calls a week after my blood draw with information on my tumor markers. As of today, he hadn't called, so I called the office.

I was pretty sure they were up. They've been rising with mathematical precision...multiplying exponentially...In June, 98; now, 298. I had been hoping that they had dropped, that the Faslodex and Zometa were working. Nada. The oncologist is on vacation and I'm not due to see him until October. I'm due for another Faslodex injection in a couple of weeks.

I think back...what has changed in the recent past, in the last two years really which would have caused the cancer to come back and so virulently? Sleep? Yes, I've been getting less than I probably should, but what mother of a teenager doesn't? My diet remains good, and in fact, for the entire period of Lent this year, I gave up sugar.

Yes, I'm under a lot of stress. Having a 17 year old daughter doesn't make for the most relaxing of times. I think back too to when I was first diagnosed, and then with the recurrence. I remember begging God to just let me make it long enough for my daughter to be older, and not in so much need of me. Well, 17 would be that....and then I start being disgusted with myself. That kind of thinking is magic thinking....there isn't a higher being out there who is ready to snip the threads of my life just for fun.

It's easy to get into this kind of thinking. For most of us, there is no real known reason as to why recurrences, or even the initial cancer starts. There's nothing really we can do except to live our lives as healthfully as possible.

And don't let our fears and wild imaginations get the best of us.