The Perception of others

Today I went to place my daughter's graduation photo order. I had made this appointment last week, before I discovered I had to run to Kettering to get another treatment. The photographer was in Springfield, 45 minutes away. Doctor's offices are notorious for not being on time, so I let the photographer know that I might not be there right on time as I was getting another cancer treatment.

When I got there, I placed the order and we talked about my having cancer. One comment he made was "You must ask yourself all the time why this happened to you."

I think he was shocked when I said, "Actually, no. I don't think that at all." I've always been of the opinion that spending time in this way, moaning "why me????" is a waste of time. The reality is that those of us who are diagnosed with cancer are just sideswiped by evil. I would bet that most of the people you meet have some sort of burden. While you might think that theirs is minor, to them it may be all that they can bear. Sometimes, you never know the horrible things that people have had to withstand. Life is uncertain, both as to length and as to what will happen to us. To listen to anyone say that we are supposed to have it easy and go down a primrose path is a fool....or delusional...or both.

It is a rare person indeed who is absolutely happy with all that has confronted him. I prefer to look at the sunshine and bask in it's rays, to run in the rain and be thankful for the drink that the earth is getting. Why waste your time wondering "Why me?" Why not me? If you think that things like cancer happen to "someone else," just remember this, to everyone else YOU are "someone else." The only time I ask "why me" is when I'm trying to think of the cause of my cancer so that we might better fight it.

Getting Good Treatment: A cautionary Tale

As I mentioned in my last post, I had an appointment for treatment and to visit my doctor on Friday. Originally, the appointment was set for Tuesday, but since I had visitors, I moved the date to Friday.

I went in and waited. I was ushered to the exam room and as the nurse deposited me there, I asked that perhaps while I was waiting for the doctor, I could have my Faslodex shot, but I hadn't had my blood test yet. She nodded, not saying anything and left.

When the doctor came in, I told him that he didn't have any labs because I hadn't been drawn as I was told that my appointment was for him, the Faslodex and the Zometa. He told me I wasn't supposed to have Zometa until NEXT month. That was odd, as when the nurse called, she had said all three.

I queried him as to what his plan was for treatment for me, something which is very important to do. This oncologist and I don't have a "partnership" yet, something I valued with my former oncologist. Sam Bobrow always told me exactly what he planned to do, when, why, how much and how often. I can't emphasize how important this is, especially after what happened next.

I got ready to leave after the exam and I was retrieved by someone who was going to do my "check out." I was puzzled and I said, I don't think so, I haven't had my blood tests yet and I'm supposed to get treatment. Evidently, when I was rescheduled, the scheduler failed to include my treatment switch. I told her that I really didn't want to leave without it...the injection takes 10 minutes and it is a 40 minute drive for me to get to the office. Ten minutes is an exaggeration as it probably takes less than that. So....I had to wait. I had to get put back into the lab and have the lab read to make sure that everything was a go to get the Faslodex.

Finally, I went into the room. The nurse said " Ok, we'll give you your Faslodex shot now, and then you'll come back on November 10 and get your Zometa and another Faslodex shot." I think you had better check that, I said. I'm supposed to get my Faslodex once a month and since today is 10/22, it is only two weeks until November 10th. So....I had to wait while she checked. She finally came back, his annotation was Zometa and Faslodex in NOVEMBER of 2010 (hence, 11/10). So, I got my injection, got scheduled for my next appointment and at 11:38 I left.....three hours and eight minutes after my appointment was scheduled... I ran some errands and went home, and had lunch.

I was packing for the quilting retreat I was supposed to go on at 3:30 when the telephone rang...at 1:38. It was the nurse....she had made a mistake and only given me half a dose of the Faslodex....that Dr. Sabier's wanted me to have two doses as that seemed to have better results. So, would I please come back.

I'm irritated now...not only do I have to go back, but the last dose I received was only a half a dose as well then....I got two injections the first and second time, and one in Sept., and I'll have two now. If the doctor had told me exactly what I was supposed to have and when, then I wouldn't have to make a second trip and I wouldn't have missed half a dose.

Why is it so hard for a patient to get the treatment they are supposed to get? Why must we fight so hard? Maybe it's just me, but I'd rather you all know to ask exactly what is to happen and when so you won't have missed part of your treatment and have to return. One can only hope that it isn't going to threaten my results by getting half as much in one treatment as I should and having another treatment spread out over several days.

Today and Tomorrow

Today I was out working a little in my garden. My neighbor popped out and asked me how I was doing. I feel like this is always a loaded question. Do I tell them that I'm hurting and I'm afraid that this is what it is going to be for the rest of my life? I just nodded and said "I'm OK."

She proceeded to tell me about her daughter-in-law, a woman who is older than I am and was diagnosed with breast cancer last year. "She's cured!" my neighbor chirped. I'm afraid at that I just mumbled something incomprehensible and walked away.

I was irritated. At present, breast cancer can't be cured. It can be beaten back. It can be managed as a chronic illness, but it can't be cured. If it could, I'd be first in line to get the magic elixir.

Tomorrow, I go to the oncologist for my monthy dose of Faslodex, a once every three month dose of Zometa, and my once every three months visit with my doc. Hopefully, my tumor markers will have fallen. They take a week to get back to me. My current doctor, James Sabiers, is a good guy, but he's not used to working with me yet. He tends not to lay everything out and I sort of have to pull it out of him.

With my oncologist in Connecticut, Dr. Samuel Bobrow at the Hospital of St. Raphael's in New Haven, I felt like we were a team. We discussed things and he told me what the plan was...sometimes it was sort of fun as I proposed things and he thought about them....sketching out treatments on the tissue covering the exam table.

With Dr. Sabiers, I'm not there yet. He did tell me that if the markers rise, then the Faslodex and Zometa aren't working and he'll put me on chemo. Tomorrow, I'll make him outline what and how long. This will be the third course of chemo I've had if I get it. I'm pretty sure that I'll have to get it as my bones tell me that things are not going too well. Last night not only did I have the pain in my pelvis (the acetabulum) but I also had extreme cramping in my feet.

This summer, I made a quilt for a lymphoma patient. On the quilt, the person who commissioned it had me write a saying by John Wayne. I really liked it and wondered that I had never heard it before: "Courage is being scared to death but saddling up anyway."

Protecting the Cancer Survivors and their Relatives

I've been thinking about the Breast Cancer Bill of Rights that the Susan G. Komen foundation has been promoting. They've been pushing for us to contact our politicians and remind them that we vote and that we want certain points to be covered. (I wrote about this on October 4). Their Bill of Rights just doesn't go far enough.

People who participate in studies which involve genetic testing, as well as those who have genetic testing done should not have to live in fear that their relatives could be denied insurance or have claims related to the testing denied based on the positive results for gene abnormalities which are related to cancer. Why? Having a gene abnormality doesn't mean that you will develop the disease. Being related to a person who DOES have such a gene abnormality doesn't mean that you will have the abnormality. I shouldn't have to be afraid of this because I participated in a study to try to find the causes of breast cancer so that other young women won't have to worry about being sideswiped by this evil in the future.

I shouldn't have to worry that my husband wouldn't find a new job in time for my cancer to be covered.....if we had not been able to continue with our cancer coverage and let it lapse when he was without a job for 2 years, we would have been in deep doo-doo.

Women who are not covered by their own insurance should not have to stay in toxic relationships because they need the insurance.

What other things would you like to see in the Cancer Bill of Rights which the Komen Foundation didn't cover in theirs?

Pains and Pink Outs

As an update. Last Friday, I went to my general practitioner who ordered chest x-rays on me after pounding on my ribs....which didn't hurt. He is a great doc, who went on-line to look at my views. He called me immediately. While he said he isn't a radiologist, he didn't see anything wrong with my lungs or my ribs, except for a small area on the 10th rib, not in the area where I was experiencing pain. So....we're guessing that this problem is muscular or neurological in nature. It's better, but not gone.

In the meantime, my daughter's school has themes for each week's football game. This week, they are having a "Pink-out" in recognition of breast cancer awareness month. To that end, I was dying her some tie-dyed pink shirts for her and some of her friends to wear.

As I work on these, I keep on hoping that these girls won't have to live through this, that perhaps they will do better at finding a preventative or something for breast cancer.

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.