Planing

Tonight, as I was making dinner, I was listening/watching the NBC tribute to Teddy Kennedy. I thought back to riding my bike out to Chappaquidick and wondering how one could forget that this man was on this desolate bit of road with a campaign worker...and...well, you know the story.

However, Teddy seemed to have turned a leaf. He certainly seemed to have been able to do a lot of positive things for someone who would probably best be described as a rogue...

Anyway, what I was thinking as I chopped up yet another zucchini was that the networks had had time to put together things on his life and get interviews with people to show what a complex person he was.

I also thought back to a friend who died of Cancer about 5 years ago. She had only been diagnosed for a short amount of time. She wasn't terribly ill when she was diagnosed, and she was also in her 80s. She put together her own funeral. She spoke with the minister about what she wanted to be said, what rite she wanted (she was Episcopalian), and most importantly to her, what music would be used.

Music was incredibly important to Dottie. She sang alto in the choir with me and still had a good voice despite her age. Her children and grandchildren were also musical. Her service was long, but it was beautiful, and I'm sure she, and everyone who was there, enjoyed it.

Regardless of whether we have cancer or not, we should write down what we want to have done/said at our funerals. That's one gift we can make for the bereaved we leave behind.....the fewer decisions they have to make, the better. Copies of instructions should be left with several people so that they can easily be located.

I know that my daughter knows I want to be dealt with as cheaply as possible and to have a party for all my friends in celebration of my life afterward.

I hope that they know who to contact (my quilting friends) to disperse my collection of fabric, etc. I shudder when I think of that task....

While I suppose some would consider setting out what I want to have done in the way of funerals, burial place, etc. is maudlin, I think it would actually be the best gift in the circumstances that I could give to my loved ones....the ability to know that it was being done the way I would have wanted it with no argument, and for the least amount of decision making necessary for the people I have left behind.

Something to think about. Besides, I can then lie all I want in my obituary. :)

Sometimes I just want to scream!

Sometimes I feel like I want to scream! All knotted up...why? Information comes out and says we should do this and avoid that....then a week later, they say avoid what we had been told to do before and now do what we've been told to avoid.

Eat this! Do that! Well, heck. Life is just too short to do all the things that "They" tell us we "should", "must", etc. and usually, it is too expensive anyway (anyone check out a quart of Mangosteen juice lately? Ever notice it is mostly cherry juice anyway?????).

While there may be truth in bits and parts, I have decided that for me, I will try to do things in moderation (stopping eating sugary things is one thing I think I must do MORE of ) and choose the path which makes the most sense as well as is based on sound science.

To cut, or not to cut.....Prophylactic Mastectomies

Back when I had my mastectomy, I opted not to have the other breast removed as well. I felt that it was healthy, and I just couldn't face any more surgery (read mutilation) than I had to have.

In addition, I figured it didn't make much difference because even if you had a
prophylactic mastectomy, it wasn't a guarantee that it wasn't going to come back.

When I moved to Ohio, my new oncologist asked me about it as he thought it would be a good idea. I responded that it wasn't fool-proof, so what was the point.

Now, I wonder if I should. Of course, I am not BRCA1 or BRCA2 positive, I have yearly mammograms and P.E.T. scans. I think that somehow I felt that leaving the remaining breast was like a "cancer catcher", that is, instead of attacking my brain, lung, bone or liver, it would go after the breast (this is not true, for instance, my recurrence included mets to the bone, but the right breast wasn't affected...just the left, but it was my magical thinking after having been diagnosed the second time).

I guess that reducing a second primary to the opposite breast by as much as 93% would be a good idea, even if the remaining breast tissue on the chest wall or in the nodes was still at risk of developing cancer.

I don't relish another surgery. I suppose, I should think more about this after having my yearly scan and hopefully ruling out any involvement with the pelvis which is still giving me problems.
I'd love to hear anyone's thoughts on this as I'm completely on the fence. Some of my friends have had bi-lateral prophylactic mastectomies...I think at present, I'm just chicken and that's OK.

A Cautionary Tale about Axillary Dissection effects

A couple of weeks ago, I happened to look at the upper tricep area on my arm...right at the point where it hits your back or your side....the side of your back? as I was getting ready for bed.

I was alarmed to see that there was a HUGE welt...about 1 1/2 - 2" long about 1/2" wide and raised about 1/4". I suspect it was a spider bite, but it was red and angry.

I never felt it. I wouldn't have noticed it except I happened to see it out of the corner of my eye on the mirror as I walked by it.

I never really noticed until then how much nerve damage I had there from the axillary dissection. Basically, the whole tricep area is numb.

I will have to pay particular attention to make sure that it doesn't get infected. P. J. Hamel on the Healthnetwork also pointed out that one could get lymphedema quite easily from this.

Lymphedema can happen at any time post-op....6 months, 6 years...or for me 60 years. ...ok..more like 16 years, I doubt I'll make it to 109. It is something to be aware of. I'm fairly lax about it...but certainly using antibiotic ointment on small cuts and insect bites on the affected arm, as well as using hydrogen peroxide is not out of line. My sister got lymphedema when her dog pulled sharply on her leash. I hear that you are supposed to make sure that you carry heavy loads on your opposite arm...and I admit that I'm very bad about that as my left arm is my strongest.

Anyway, just a little heads up and a reminder....be aware, fore warned is fore armed...not forearmed. ; )

I face my own Mont Ventoux.

If you follow the Tour de France, which all of us do in this household, you'll know that Mont Ventoux is a sheer climb, known as "the wall" for the men of the Peloton. This year, Mont Ventoux comes at the end of the race, just one day before the race culminates at the Arc de Triumphe on the Champs Elysees in Paris. The arch of triumph on the Elysian fields.

In Greek mythology, the Elysian fields are the final resting place of heroes and those of great virtue. The Arc de Triumphe is a triumphal arch...an arch which was built to commemorate battles by the victorious, in this case, Napoleon commissioned this monument to his successes.

Why such a title, then? Largely, due to frustration, hence, my Mont Ventoux. I make no secret of the fact that I am a Stage IV breast cancer survivor. Lately, the pain in my hip has gotten much worse. My right hip, the area where I had the bone metastases in 1997 is weaker, in addition to being very painful. While this is quite literally a pain in the butt, it is also a little scary.

No. Correction. Make it a lot scary. While I could live with the fact that it hurts, my tumor markers have risen for two checks in a row. I'm out of the "OK" range and into the problematic range.

My Oncologist shrugs and says that for some unknown reason my markers rise and fall. However, I'm a little concerned because they usually don't stay elevated for two times in a row (three months apart). He calls tumor markers "cooties," in that if they are really significantly elevated they tell us something, but in situations like mine, they may mean something, they may mean nothing.

Then, he cheerfully told me "Besides, even if it is cancer in your pelvis again, I wouldn't do anything different. As it gets worse, we'd use radiation for pain control."

Ducky, just ducky. Now the other frustration is this. You can't miss the fact that I am having trouble. I favor that leg. My neighbor was suggesting that I not eat dairy or wheat products and started suggesting things for arthritis. I explained that it wasn't arthritis. I've told her before that I've had stage IV breast cancer and had bone mets.

Yesterday, she suggested that I go to a non-traditional doctor in town, that he wasn't a chiropractor, but he might be able to help. I looked at her and said, "If it is what I think it might be, then I don't think he can help much." She asked what I meant, and I explained that because my tumor markers are up, then it might mean it's back. "But you only had breast cancer." Yep. She said, I ONLY had breast cancer. I replied, yes, with bone metastases. She had no idea that it can spread to the bone.

Sometimes I forget that the general public doesn't know what stage IV cancer means. In fact, many people don't have the foggiest idea of what the whole routine is.

I recently read a novel written collaboratively by three women who run a quilt shop. One of the characters in the book is diagnosed with breast cancer. While she doesn't have to have chemotherapy, only radiation treatments as the cancer was caught early, these authors had her lose her hair and vomit. I just about threw the book across the room.

How can people be so uninformed? With all the women who get breast cancer, why couldn't they ask what the side effects are or do a little research on line? There's that much mystery? Radiation can make you tired. It can make you have "sunburn". It doesn't, unless you're having it on your head, make you lose your hair, and it doesn't make you vomit.

So...here I am snarling about people who, although there are tons of people getting diagnosed every day, can't seem to get it into their heads about what it means to those of us who have it.

And me? Well, I see my oncologist in Sept. At that point, I'll ask him about getting an early scan (my last PET was in November, 2008). If it is cancer again, I'll ask my doc in Connecticut for a second opinion as I REALLY don't like this 'there's nothing to do except pain relief.'

Is it my final wall? Will I be going soon to the Elysian fields myself? I don't know, but it isn't going to be tomorrow. And it won't be this year. I will someday have a final resting place, as Life has a 100% mortality rate at present....but for now, I'm here. : ) ....and maybe I'll just wear the Yellow Jersey....and the polka-dotted jersey for the Queen of the Mountain.

Oh yes..the photo is sunrise on the Rocky Mountains towards Glacier park from my mom's kitchen window in Montana.

To tell your child or not tell your child?

To tell your children you have cancer, or not to tell your children you have cancer? I wish I had an angel like Mary had in this stained glass image of the Annunciation which is presently on display at the Navy Pier in Chicago.

Recently, on the HealthNetwork website, someone shared her experience as a grown child whose mother shielded her from her having cancer when she was 9. PJ Hammel lauded her mother for sparing the woman the knowledge of her cancer thereby preserving the daughter's childhood.

Hmmm.

This is a really personal decision, and I suppose a tough one. As I have said before, I had my first bout when my daughter was 15 months, so that was no biggie, she lived it, I didn't "tell" her.

The second time, she was 4 1/2 years old. I didn't shield it from her, I merely told her I had cancer and was very sick and that things would be a little different and difficult while I was getting medicine for the illness.

I didn't shield her from it because you can't hide the fact that you're bald (in fact, I had no hair anywhere...I lost most of my eyelashes and eyebrows). I didn't know if Taxol was going to make me ill (it didn't make me throw up) but I knew that I was really sick on CAF.

In addition, previously I had been pregnant with twins. I had decided not to tell her until it was closer to my due date and I was showing as I thought that the concept of 9 months was a bit much. A friend, who had a child her age, asked and I told her I was pregnant and was carrying twins and was not going to tell my daughter until I was further along in my pregnancy.

Within 24 hours, she told her 4 1/2 year old that I was going to have a baby, which meant I had to tell my daughter. This made it really difficult when I miscarried at 3 1/2 months.

Knowing that I had expressly said I wasn't going to tell her and to have it bandied about with a pregnancy, I knew that you couldn't keep a cancer diagnosis quiet. People would talk in front of her, and most people had me with both feet in the grave at this point since it was stage IV.

I felt that not telling her about it would make it more scary and I certainly didn't want someone other than me telling her. I also felt that having a culture of denial wasn't the healthiest to start a child out in life with.

So....she knew. I also thought it was important that she know because she would have to be careful. I know women who had it swept under the rug and when their daughters developed breast cancer and were dumbfounded, it came out that the mothers had had it too....and perhaps they would have proceded differently had they known.

Was it the right choice? I don't know. Time will tell. She is a normal, self-absorbed teenager. She is proud that I went through Hell and came out the other side. Has it affected her in other ways? I don't know. I am fearful for that but as a mother, you're fearful for a lot of things you do in your parenting techniques.

Does she remember it? Probably not. She can't remember that we used to have dinner in the dining room every night in the house we had in Connecticut from her early childhood until she was 11....so, would it have made any difference? I don't know. She remembers going places and staying with people as I got treatments. More than that, not much.

When she's older, I'll ask her about the choice I made. Right now, I'll just count is as another difficult item in the list of things one deals with when one deals with a cancer diagnosis.

Carpe Diem: Sieze the Day

Yesterday, I got an email from someone I have never met before. She was following a Yahoo group on Breast Cancer Stage IV which I left in disgust because it had basically been hijacked.

She had been 15 years cancer free, but recently breast cancer returned as stage IV.

This drilled home the message for everyone: Seize the day. No matter how long you have been cancer free, breast cancer may return at any time. I have known people who had been free of cancer for 30 years and had it return (and they didn't die from it, so again, you can beat the odds).

It brought to mind my neighbor in Meriden. She was diagnosed with liver cancer, and was pretty far along when she found out. I was visiting her and she was in tears, which was more often than not even though it had been several months since her diagnosis. She was worrying about dying and about whether or not it would be painful.

I asked her how she felt today. She was startled, and said "Fine." Well then, enjoy the day. Do what you can. Do what you want. Go to the beach, eat a popsicle. Jump a rope. Do something you haven't done in years. Most of all, have fun.

None of us know the hour of our death. All of us hope it will be pain free. So, go forth, and seize the day which has been given to you. Know that bad days will pass, but for the days you feel well and have control over, enjoy! Have Fun! Fill it with love!

And...forgive my pun with my "carps."