Wednesday, July 24, 2013

Our Decision

Cancer is not cured. You have surgery; all traces of cancer are removed, but someday, maybe, it could return.

It’s up to you and your oncologist to figure out that risk, and make your decisions accordingly. It goes without saying that your partner, or a close, trusted friend or relative needs to be involved in this decision also.

For me, we decided to do a cancer evaluation, called the Oncotype DX, to determine what the percentage of recurrence was in my case. This test looks at many variables from my pathology report and the tumor itself, and comes up with a “score.” Remember, this score is NOT the percentage number. The score is between 1-100. Mine was 23.

Experts consider a score of less than 18 a minimal risk for recurrence. Those between 18-32 are a moderate risk, and those over 32 probably will benefit by chemotherapy as well as radiation therapy. After looking at several factors, my doctor told me that my rate of recurrence was 15% and by doing chemotherapy, we MIGHT be able to reduce that number to 12%! Keyword: might! There is NO guarantee.

On the other hand, chemotherapy has many “side effects” which are more than temporary issues that we are all familiar with, such as losing hair. I could deal with that. But chemo changes the entire body and some of those changes stay with you for the rest of your life. It is possible that chemo causes OTHER cancers!

After weighing the 3% MAYBE change with the possibility of side effects such as other cancers, and other issues that can come up later; we decided to forego the chemotherapy.

Remember, the cancer could come back and I can beat it AGAIN!

So, next week I will confer with the radiation oncologist, and we will determine when to begin the radiation treatment. It is 33 treatments, over a 6-7 week period. We do have Labor Day in there. After the radiation, I will be on a medication for 3-5 years. This is an estrogen-blocker, which inhibits the estrogen-fed tumor(s) from returning. It is reasonably priced.

I am at six weeks post-surgery and I am where I should be: mostly healed, but still a little tired. I am looking forward to adding certain cancer-fighting foods to my pantry, and getting back to the gym for relatively light exercise. No boot camp for a while! However, I need to move. I will have some fatigue as my body “lights up” with the radiation, but I hope to still manage several trips a week to the gym as I gain strength. Like the tortoise; slow, but steady.

After all, this is the rest of my life we are talking about!

As a P.S., remember that all cancers are different. You can’t even truly compare breast cancers, but comparing prostate cancer to breast cancer is like comparing a camel to a hippopotamus. My story is not your story, if you are diagnosed next month, or year or ten years. They are simply not comparable.

Sunday, July 21, 2013

Turning 60: My Pandora Bracelet

When I began the “Turning 60” Series, I mentioned that I wanted a Pandora bracelet and that I would buy (or be given) one charm a month during this year. I am happy to say that I have completed my bracelet and have an idea to start a new one and move my “travel” charms to that bracelet. That remains to be seen.

My bracelet began in Alaska, when I bought the bracelet itself and two charms IN Alaska. Upon returning home, I added colored beads to liven it up. I found a beautiful black and white charm that symbolizes my son and daughter-in-law’s black and white wedding. For Christmas, I got a cross charm and a Bible charm from the kids, and a “family” charm from the husband. For Mother’s Day I got a “Mom” charm, and for my 60th birthday I got a breast cancer charm.

These all represent the most important things in my life; family, faith and my current struggle with disease.

This has just been one year though: one capped by a big wedding and then influenced by an illness that I never expected.

What will next year bring? I don’t know.

I think I am hooked on the charms though.

Turning 60: The Riverboat Cruise

As promised, I want to share about my “Turning 60” special event for July. It indeed was very special to me and to the friends that enjoyed it with me.

About a year ago, several of us got together at my house for a “meeting,” (using that term loosely) to discuss what we would like to do for our 60th birthdays in 2013. A full year after our 40th Reunion, we had talked to others at the Reunion and in the meantime, and many agreed that they wanted to do something! So it was up to us to decide the what and realistically when.

We didn't want a party that was like our Reunions. We did that. We talked about several options before deciding on an Ohio riverboat cruise. One of our members, Becky, said that she would research the options, and we talked about a time frame. Mid-summer seemed best as too early causes issues and too late causes issues. We fully understood that no date could ever be perfect, and we stayed away from the Independence Day holiday weekend.

Some fun people
Becky did the “legwork” and provide us with options of two companies and several options within the companies. In February, over the phone, three of us discussed these options and decided upon a nice meal with prime rib and the fixings with that. There were cheaper meals and hors d’oeuvres, but the three of us wanted a nice meal if we were going to travel to Cincinnati.

Some of us wanted to spend the night also, and we originally talked about attending a baseball game the following day. That did not happen, but the Reds and the Pirates were in an important series by that time, and it would have been fun too, for baseball fans.

I took care of putting the information on the web site and Facebook, and handling registrations and communications with the Queen City Riverboats, who we ended up working with.

When the day itself arrived, July 20th, there was threat of rain. Several of us left at noon, ate lunch at a Cracker Barrel in Kettering, and headed to Covington, Kentucky to check into our hotel rooms at approximately 3:00 PM. I took a nap. The storm arrived about 4:15 and was heavy. We left for the dock at 5:00, which was a good thing since Cassie got us lost. We did arrive on time, and the weather had cleared up.

They let me steer the boat!
We had a lower turnout than we had hoped for, but those of us who went on the two and a half hour cruise enjoyed a great meal, a lovely trip in weather that was delightful, great company—everyone interacted with everyone else—and a little history lesson from the “captain.” We went east as we ate, then turned around and headed back through downtown Cincinnati, where the weather-delayed baseball game was finishing up, listened to the 7th inning stretch (“Take Me Out to the Ball Game”) as we floated by; then eventually turned around again and headed back to where we started.

We all said we would do this again. It truly was special for ALL of us.

What we did NOT do? Sing Happy Birthday to ourselves.

We celebrated life, friendships and food!

And, with a birthday that I could never have imagined, I celebrate “Turning 60.”

As a PS., Becky could not attend because of a business trip. We truly thank her for all she did in the beginning, and then not be able to enjoy it!

As another PS., I am going to continue doing something special for myself each month. I may not write about it, but I am going to do special things and celebrate ME!

Thursday, July 18, 2013

I HATE Waiting!

Waiting. I hate it.

I also hate thinking one thing, and then be told something else that changes everything. My mother will attest to this. I have been this way since I was a very young child.

After my surgery, I was told the type of tumor (in ductal invasive) and we know the size and of course that it is malignant. We know the lymph nodes and margins were all clear. We GOT IT ALL! For today.

Next up, we have to decide on treatment. I was counting on radiation and let’s get going with it! As soon as I have recovered well enough from surgery to do it, let’s get ‘er done!

Not so fast. We saw the oncologists on July 1st, and we determined that it would be a good thing to have a special test done. It is called “Oncotype DX” and they send all my information to a lab in California, and I get a “score.” This score helps us determine what the percentage of return is, with radiation, without radiation, with both chemo and radiation, or whatever.

If your score is <18 you just have radiation, between 18 and 32 you weigh the options and >32 you have chemo followed by radiation. All of which is followed by oral medication. It’s a numbers game. I get this, I have an actuary for a son-in-law. We want to make a good decision with all the tools available to us.

It is also expensive. The test runs about $4,000. I thank God for our insurance. The OSTRS makes us pay 100% for dependents and for once, I am just fine with that.

But the downside: for three weeks I have been thinking “no chemo” and now, it’s a possibility. I will be OK if it goes that way, but I.hate.waiting! For three more weeks, while my oncologist goes on vacation!

This just shook me up in way I wasn't expecting. I had my own ideas of how my next couple of months were going to be, and I was ready for that. Now, it’s different. Maybe.

My first call was to my daughter’s mother-in-law, who is an RN and has been through all of this. She helped relieve some of my concerns, but we both know that we are all unique and I can’t compare my situation with hers. Her score was 13.

That night I cried a lot. I didn't sleep well at all, and I was expected at work the next day. So begins my three weeks of waiting.

Then, I decided not to be so passive. I called my nurse liaison at the Women’s Center and I told her that I wanted her to call the Cancer Center and ask them to have another physician call me with the information while my oncologist was on vacation. I get vacation; he’s earned it, but if he were an obstetrician, someone would be covering for him. The nurse calls me back with the assurance that they are looking for my results at the Cancer Center.

I let three days go by, so I then called the Cancer Center myself. I talk to a nurse there, and the results were not back and the doctor has left on vacation. I assure her that I will call next week—that would be Monday. And Tuesday. And Wednesday. My appointment is the following Wednesday.

I called on Monday and got a hold of a nurse who called the lab in California. They told her that my test would be finished on Wednesday. She promised to follow up on this, and although she was not working Wednesday afternoon, would pass off the notes to another nurse and she named her. So on Wednesday, beginning at 11:00, I start getting nervous. I waited all day and realized that after 4:30 PM, I was not going to hear.

I understood that California was three hours behind us, and even if they finished the scoring, it would set on the fax machine all night. So if I did not hear by 9:00 AM the next morning, I would call yet again.

And I did. I got the same nurse, who called the lab in California again, and she was told the test results were IN THE MAIL!!!!! Are you kidding me? Who mails anything anymore? She talked them into faxing it to her and she would call me when it came in. About 40 minutes she called.

It was not exactly the results that I wanted to hear. I wanted to hear something definitive, preferably that the score was less than 18 and that I would just need radiation. I wouldn't have minded if the test was definite in terms of chemo, although I certainly don’t WANT to, it would be the thing to do. But my score was 23, not on the cusp of the radiation camp. Fundamentally, in the middle.

This means decisions to be made. So the Teacher and I begin reading, and of course, talking about it. Actually, this is a good thing. Imagine going into the consultation with the doctor and having to make decisions within a 30-45 minute period. My brain just doesn't work like that, and neither does my husband’s.

At present, I tend to think aggressively. But, I will look at statistics and see what the numbers tell us.

However, hear this! God is in control, and these tests are numbers only and do not acknowledge God.

I do not forget that. It’s time to be in prayer.

Next up: Our decision.

Sunday, July 7, 2013

The Partner

One cannot address the issue of cancer or any illness without talking about the support system. My husband and I have agreed that I never speak for him in this blog. So what you are about to read is my feelings only about the support that he has given me during this time, and what I am assured that he will continue to give me as long as the situation warrants it, as long as I am alive, or as long as he is alive.

These are my feelings and observations.

I have always been pretty independent. My little joke was that I married him to do my taxes and take care of my car. I should add mow the lawn, but I would just hire it done. My dad and mom taught me how to do lots of things and I felt capable of taking care of anything. 

Hubby and I enjoy some of the same things and some different things. However, the last few years we have been pursuing those different things and growing apart to an extent. This has nothing to do with the “empty nest,” although an argument could be made for some of those “same things” being the things our children were involved in.

As we pursued our own interests, we were less “connected.” It wasn't a horrible thing; just that life became what I always called the “news, weather and sports” conversations. Once in a while a decision had to be made about something, and a discussion ensued about that.

Enter serious illness.

I never should have been alone when receiving the initial diagnosis, but I was. After all, I am an independent little cuss. Also, I think we both thought the results would be negative. Looking back, there is reason to believe that the health care provider knew the results and set up the appointment accordingly. We didn't know that and figured it would be a normal day.

From that day forth, however, it was plain to see that we were in this together. Whatever would happen, he would be the second set of ears to hear whatever was going to be said. I knew from that first day’s experience, that at some point, the patient can very easily shut down mentally. You must have another person with you!

We saw the surgeon in two days, and it really IS handy to be married to Mr. Biology Teacher. His mind works in different ways than mine does and he asks intelligent questions of the surgeon. We all decided that since the treatment was going to be the same regardless of the outcome of surgery, the doctor had an opening for the following Monday and let’s just do this!

I should mention that my husband has had one surgery in our married life. It was a rhinoplasty and I had just had this same surgery six months previously. Fundamentally, it’s a reaming out of the nose so you can actually breathe. It is the most invasive surgery I have ever had because it does involve every breath you take. I however, have managed to have so many surgeries that my body looks like a road map. He has taken care of me through all of them.

Before we had children, I had an ovarian cyst removed which turned into exploratory surgery in that we were able to find out that I had endometriosis and deal with that. That was a 5 week recovery (meaning off work, the recovery actually takes longer). In 1988 I had a caesarian section birth; Mr. “Failure to Progress.” In 1996, I had carpal tunnel surgery early in the year, and the rhinoplasty in November. Both of those surgeries required time off from work and my Mom came to help with the carpel tunnel recovery.

In 2003 was the breast reduction surgery and that was far more invasive than most people imagine. They think “boob job,” think cosmetic, and don’t realize that we are talking about two and a half feet of stitches, no matter WHERE they are on the body! My good friend Deb came and helped me after that surgery. She helped change dressings and as a nurse, was able to help me from the surgical perspective.

Through all of these events, my husband was by my side; although I fully acknowledge church members, neighbors, family and friends who were also a support to me. Jerry didn't have to take long times of work off, before and after the FMLA.

Did it prepare us for this journey? That’s a good question.

Probably, to an extent. That said, there are certain qualities about my husband that make him a very good person to have around. As mentioned, his scientific mind, which asks the questions. Teachers research; that’s what they do. We were on the Internet the first night, sitting side by side, looking things up, learning. With each new concept thrown at us, it was to the Internet he went.

He pays the bills. When the first bills started coming in, I just said, “You deal with it. I cannot handle this.” That does not mean we never discuss the charge for something. It does mean that I am not keeping track and going over that in my mind, in addition to the things already going through my mind.

He is a servant at heart. He does the housework and laundry and sees to it that there is food in the house to eat. We won’t stretch the issue by calling him a cook. When I was most down, he was aware of my needs. We haven’t had any puking or any other ugly stuff yet, but he has cleaned up after my puke in the past, so I know he will rise to the occasion.

He is calm. While I am bordering on an anxiety attack when doctors are running late (and I am cold wearing the gown), he stays calm and collected. By the way, I should mention, that these doctors do run late, but they take as much time as needed for me too. While frustrating, I wouldn't have it any other way. I just don’t do well with “not knowing.” If someone comes in and tells me, without breaking any HIPPA laws, what is going on, I am very understanding. I want the best care for all of us.

He makes sure that I get out. While my “other” support system sends me texts, cards and emails; usually no one is coming over to make sure I get out of the house. They visit, but they leave. The Partner makes sure that I get out, until I am able to on my own. At first, I don’t want to, but eventually I do.

The day we were at the Cancer Center and I was presenting all of my already-filled-out paperwork, I had one question of the receptionist: What did this one form mean by “name of insured?” Well, we are both insured, but did they want my name or the owner of the policy, which was him? Indeed, they wanted his name and I was writing it down and made some comment about “Yes, dear, I AM your dependent!” to which he responded, “Don’t forget that!” in his little joking manner.

Worry not. I won’t forget about THAT at all!

Monday, July 1, 2013

Turning 60: My Birthday

In winding up the “Turning 60” series, I have a few general parting thoughts.

Each decade brings its own challenges and joys. When I think of “turning 60,” the most sobering thought is that, for the first BIG-O birthday, I have the doubt that it may be my last. I am not presently
ill, and I have decent family history, and other than being overweight, I haven’t indulged in too many sins. The fact is that many people DO die in their 60’s and I am not special in any way.

That said, I am taking a “seize the day” mentality in many things! I have a Bucket List and at the same time I still have goals.

When I turned 20, I was entering my third and final year of college. I don’t remember doing anything special. It was a time of looking ahead, to one more year of college and beyond, to turning 21 and being able to drink legally, and embarking on life! It was the summer I nearly drowned, and that did cause me to pause and consider life in general. My body was in good shape; I was toned and looked great for me!

When I turned 30, I was in my second trimester of pregnancy, so there was no partying going on! However, I was very happy to be in that place, we were adding on to our house and that was a real mess, and I was looking forward to baby showers! Life was good. I was happy with how I looked, even as I was pregnant. I was going to look worse; but the second trimester is generally a fun time.

At 40, we had just moved into our family home from our starter home; and there was no party that year either. Jerry and I decided that a new oak dining room table was as good a birthday present as a person could want. I loved my country home and I loved everything that it represented in my life; a big yard for kids and friends to enjoy, room to entertain, spaces for us to spread out when we wanted to, and a “home” in an established neighborhood.

I weighed 144 lbs. the day we moved in. I was getting plenty of exercise moving kids’ stuff up to the second floor. I built shelving in their closets so they would have room for all their stuff. Jerry painted, but I prepped and cleaned up. I probably wasn't totally satisfied with weighing 144, but that sounds really good today. My hair had started graying but I was able to cover it up with a brown “mousse” that I combed in with a hairbrush. During my forty-first year I began to color it for real though. It was time.

I would have liked a party; but there wasn't one. I think I got 5 cards, and to this day I remember who they were from! On my birthday itself, I got a planter from my dear friend Linda. I bawled. Happy as I was at my place in life—actually I never have been happier—I still wouldn't have minded some sort of celebration.

In 2003, I turned 50. I had a daughter in college who was spending that summer managing a pool at a Christian camp. I had a son entering high school, which meant football camp, basketball camp and football conditioning and practice. I was working full-time at Covenant Presbyterian Church in Springfield, and our staff had a little party. Other than that, there wasn't much time to think about birthdays.

I had gained weight and 2003 was the year of my reconstruction surgery. I lost weight after the surgery, as most of us do naturally and I weighed in at 170. I wish I had maintained that. I was still coloring my hair. In that decade between 40 and 50 I began wearing bifocals and my skin was changing. Yes, I was beginning to get those “horrid age spots.”

Between 50 and 60 I put on the weight, slowed down, and felt the aging process speed up. This was a decade of launching my children, college graduations and weddings, my in-laws and my brother’s deaths, husband’s retirement, four job changes for me, and generally never slowing down! Eventually, it was necessary to take a long, hard look at myself and work to improve my general health. At 58 I decided to do something about that! I embarked on My Fitness Journey.

At each of these junctures, however, I never felt that I would not reach the next decade. With turning 60, I guess I know that it’s possible. The diagnosis of breast cancer really slapped me upside of the head. Even though I have an excellent prognosis, there is no “cure” and it can return some day. Or, maybe not.

If I reach 70, I will have that feeling even more, I am quite sure. It causes me to pause; to reevaluate many things in my life, and to consider what things are most important and what things aren't important.

I will attempt to live as healthy as possibly, have my routine check-ups, and leave the rest to God.

**My special thing for this month will happen later in the month, after my birthday. I imagine there will be a few stories to tell!