Tuesday, March 31, 2009

Young Breast Cancer Survivor?????

Me when I was about 2 years old. I was just bopping over at the Health Central's Breast Cancer site...and took at look at the Young Breast Cancer Survivor area. Funny....I still feel like a young breast cancer survivor. However, in looking at these posts and the information there, I realize I don't qualify anymore, even though I was once there. I've been there, I've done that...and I'm still working on raising my daughter.
When I was first diagnosed, my daughter was about the same age as I am in this picture. However, she couldn't walk (except by holding on to my pinkie tip...she was an early and awesome crawler). When I went through chemo, it was tough. I had only left work a little more than a year earlier. My friends all worked. My family was all on the west coast. My husband's family (for the most part) lived in Florida. As I didn't get married until I was 30, and had my daughter just shy of my 33rd birthday, my husband's family in the area were all older.
Getting things taken care of was difficult. I think this was my greatest worry and my greatest struggle. We worked it so that when I got treatment, my husband stayed home that day with my daughter, and I drove myself the half-hour trip to get my chemo hits. I got the treatment on Monday morning's and was released usually at about 3:30 - 4:00 p.m . I'd drive home, eat something, and then at about 6:00 I'd start throwing up. Every hour on the hour.
The next day, I'd be in a Decadron stupor while my husband, or his aunts would come and look after my daughter. On Wednesday, I'd throw up in the morning, and then be weak, but I'd then take care of my daughter. Needless to say, we watched a lot of videos and I read her a lot of books.
When my hair started falling out, I asked my husband to shave my head. He couldn't do it, so I asked my best friend to come over. She and her husband came, and we all had dinner. We put my daughter to bed, then went out on the deck. First, Martha roughly cut my hair with scissors. She kept on saying how she felt like she was at a concentration camp. After the major whack job, she shaved it. Life felt so much better as it felt like each individual hair follicle had a headache...getting rid of the hair meant that I didn't have to worry about it falling into my food or all over the house.
The next morning when I got up, my daughter looked at me, then patted her own head...I suppose to make sure that her hair was still there. I'll never forget that perplexed look that she had.
My biggest worry was during radiation. What would I do with my daughter? I couldn't get her into a daycare for only 1 1/2 hours every day for 7 weeks. I asked the volunteer services. While I could get people to drive me to and from my appointments, which I didn't need, no one would look after my daughter, even though she was an easy child.
When I voiced this concern to the hospital social worker right after having had my surgery, her response was "You mean to tell me you can't find someone to look after her?" No. I only lived in the town I lived in for a year before she was born. My family lived far away. It was such a short time, but I was without aid.
Because of this problem, I lobbied for the hospital daycare to be opened for patients who needed help in this area. I didn't mind paying, but I needed some resource. After all the majority of the time I spent in radiation was actually traveling to and from the appointments. The actual treatment time was about 30 minutes.
As it worked out, one of the techs walked around and around the halls with my daughter pushing her doll stroller stuffed full of stuffed animals, and one Water Baby doll. I know that she brought lots of sunshine to all the other patients. You could see them smile and brighten up when they saw her. She was a happy child and very out going.
The second go around when she was 5, it was easier. There were friends from church and her pre-school. I also found a day care for the days I got treatment or had appointments.
Still, I wonder. She doesn't remember much of me reading to her. She remembers going to other people's houses and staying with them. She remembers my nurses and techs from the early treatment. She doesn't remember much of what I did with her, only what others did.
I often wonder if her hard-heartedness is a coping mechanism from my having had cancer--walling off others because she might lose them. I am fearful that she will have cancer even younger than I did.
Having more children was an issue for me. My oncologist was amazed that I never missed a period through all of my treatments, even when I had the Taxol. I managed to come through the chemo and still got pregnant....but it seems that perhaps the pregnancy spurred my recurrence. I don't know, but I do find it interesting that each time I was diagnosed was right after I had been pregnant, even though I lost the second pregnancy.
Still, I look at those fresh young faces over on the website, and all I can think is that I am no longer young, even though I am younger than many breast cancer survivors. I'm middle aged. Regardless of the fact that I went through what these women are going through now, 11 years ago...almost 12 years now, and I looked much like them, I'm sure that they would think that I have nothing at all in common with them....save that I have shared this dread disease.

Wednesday, March 18, 2009

Breast Cancer Side Effects: There's more to me than there ever was

Pictures of me are rare. Pictures of me online are almost non-existent, partly because I have tried to keep myself anonymous in this regard. However....for this, I will break my rule.
When I started out on the cancer trail I was fairly slender. At 5'4" tall, I weighed 135. Most people when they are told that they have cancer, and for those who are on Arimidex and other similar medications, weight gain is one of the side effects. One of the culprits is the steroids which are used to manage other side effects of chemotherapy.
Some people, however, lose weight from chemo therapy. I maintained it. After having cancer the first time, I gained weight. Not horrifically so, but maybe 20 pounds. It was after the second go round that I ballooned.
Three months after having finished chemo and shortly after finishing radiation, I had a complete hysterectomy and oophrectomy (ovaries removed). Being menopausal then, I found that weight gained didn't want to come off so easily. I know that calories in have to equal calories out. There's the rub.
We tend to toss off this as the cancer's fault. I know that the lion's share of this is my fault. Being told that you are stage 4 has a huge impact. First, there's the "Well, heck, if I'm going to die soon from this anyway, bring on the hot fudge sundaes!" The second part of it was that I was pretty mad at my husband. He couldn't handle the fact that I had a pretty strong chance of dying. I needed him to acknowledge this and because he couldn't, I was mad at him.
Now, you have to understand that I met my husband in the bicycling club. We did lots of mileage. It wasn't unusual for me at that point in my late 20s to ride 150 miles a week, sometimes more. He's also build differently than I am. He has a naturally high metabolism and has long slender bones. I'm average in my bone structure, except that I'm really short legged, long in the body, but short in the leg. So...stuffing my face with sweets (always my downfall since I was little) was a stupid way to stick it to him. Self destructive? Absolutely.
I also know that when we tend to do things like this, we are trying to fill a hole. Guilty as charged. I also find it difficult to get the exercise I need to do because the radiation really really hurt the muscles on my pelvis. It feels like I have a constant knot there, and trust me, I'm as reliable as the local meteorologist in predicting changes in weather.
It has also given me new insight....one I'd rather not have, of how our society treats people who are overweight. We are invisible. When people do notice us, there is an element of "have you no self control? Are you so undisciplined as to turn yourself into this? Why don't you take care of yourself?" Sometimes, there is just too much to take care of. We are, as a nation, prejudiced against the fat.
Right after the first go around, and also after the second go around, I did all that I could. I walked for at least an hour a day. I did step aerobics (now that was a trip....literally, imagine someone who has a hard time remembering her right from her left doing some of these Charlestons left then switch....hey, I have two rights...), I did water aerobics (and was the youngest in the class). I found it difficult to get the exercise done and still be mom and wife. So, after a while, I gave up.
I also know it is far to easy to blame the cancer and the treatment. At 11 years post therapy it is time to do something about it. Maybe now that I recognize what the issue is, I'll be able to think about it and decide not to put that piece of chocolate in my mouth....or rather, put one piece of chocolate in, not 5.

Monday, March 9, 2009

"My Cancer" and other verbage I hate

Gosh I hate this picture. For some reason, the Komen hat I got in 2003 had a problem with the brim...and it stuck out.... This was 2003...5 years after finishing chemo, and 5 years of growth on my hair. My daughter didn't let me cut it for a long time...I guess it was because she associated me having no or short hair with having cancer.
Something has been bugging me for a while. Cancer survivors tend to refer to cancer as "my cancer." I hate that. It is true, it is our cells, so therefore totally ours...but, I don't want to own it.
It is true, for anyone who has had cancer, it is so much part of our lives....but I don't want it. I don't want to claim it. I want it gone. I do not want to say "my cancer" as if I was referring to "my dog" or "my daughter." That's pretty unrealistic. What we have gone through shapes how we view things and how we react to them. We have seen battle. We have the scars. We must move forward. Peace with this enemy? I don't think so....
Another thing I hate is when people ask you "Are you in remission?" To most folks, that seems like "Are you cured?" Cured? No. Are there any discernible signs of cancer? No, but that doesn't mean I'm free....
My current oncologist has noted something. My tumor markers are usually within the normal range...but every January for some strange reason, they spike out of the normal range. However, they drop again. He commented on that. I've wondered if it has something to do with the amount of sugar I tend to eat in December, or the stress of Christmas. I suppose it doesn't matter. He usually just says "So, how are you feeling?" If I'm feeling fine, then he says not to worry.
I guess I'm getting to the point where it isn't ALWAYS on my mind. For instance, I had my annual mammogram on my remaining breast at the end of January. It was a real trip. I knew I was fighting a virus that my daughter so graciously brought home. However, they thought they saw something on the mammogram, so they sent for an ultrasound right then and there. They picked up something on the ultrasound, but I told them it was lymphatic. That sort of startled them. I told them it hurt, and it was getting more enlarged the more they poked and prodded me, and pointed out that usually BC doesn't hurt, and certainly the lumps didn't get bigger within the 2 hour time frame that they were poking and prodding me.
So I went home. Usually, I'm sent a letter shortly later telling me the results of the mamm. This time, I didn't get one. I occurred to me last night that I hadn't heard the results, so I thought I had better call my GP. Since I had my first mammogram in OH locally which was ordered by my GP, I thought that I had better keep all of my mammograms done at the same place, particularly since I had no mammograms from earlier. (Ohio State University LOST three jackets full of my mammograms, bone scans, and other tests which had been done before digital came in.....they've never found them, nor has anyone apologized for losing these records).
Since my oncologist practices at a different hospital, I have to call the GP to order them, and then make sure that the Oncologist gets copies.....sometimes they goof and they don't get sent to where they are supposed to go.
So, here it is, a full 2 months later and I call to find the results. That is certainly not someone who is too concerned....I called, they said everything was normal, so I'm test free until my next PET scan which is usually in November or Dec.
But....one thing is for certain, we must all be our own patient advocates and make sure that we follow up. I have to remind my self that I have to keep track of where I am because no one else is going to do it.

Sunday, March 8, 2009

Being in the right place at the right time...

At right is my quilt(ette) "Life is like a box of Chocolates." This was a challenge from my art quilt guild to use an antique crazy quilt square (unfinished and in poor shape) and bring it back to life. I chose the saying from Forest Gump...and somehow it is appropriate here...we never know what we're going to get, and the fact that this tattered block is now finished and enjoying new life, not what it once was, or was going to be....but new life and perfectly acceptable as it is.

This last week, I went to Bloomington, IN to go to a quilt show (see my other blog for details). While there, I stayed at a motel and noticed a woman who came in for breakfast wearing the same picot knitted cap that I wore (and still have) from the American Cancer Society's cancer products store. I loved that cap, and still own it because I thought it was beautiful...

I told her I had that same cap and loved it. She said it was to cover her thinning hair. I started talking with her more fully, and discovered she was in town to get Proton irradiation on her brain as she had some spots there. She had been to Mayo, Anderson, Sloan Kettering and Bethesda, and they all had differing opinions They knew she had some form of cancer, and most agreed that it was a secondary, but they couldn't tell where the primary was so they didn't quite know how to treat it.

I felt like I had been put there for a reason. I commiserated with her. I know what it is like to be told that they see something, but don't know what it is. While we learn more about cancer, our ability to see things outpaces the ability to understand what we are seeing. I used to laugh at my oncologist, Dr. Sam Bobrow , and tell him that he was practicing "voodoo medicine". I think that the key to cancer lies in the fact that these are our own cells which have run amok, and while our cells are similar to someone else's cells...it is still more individualized than we may think.

This woman was still in the struggling stages of understanding what has happened to her. As I write this, I laugh, are we ever out of the struggling stages of understanding? I don't know what road is going to be hers. I do know that when we are told we are stage IV, often our immediate reaction is to dwell on how many don't survive. However, we do have that 10% chance of survival. Ten people out of a hundred will beat the odds. I always dwelt on that. Who is to say which of us will survive, and which of us will be hit by a car when we cross the street? Indeed, the chances of me being hit by a car were greater than my chances of getting cancer.

I also know that all of us, cancer survivors or no, have to look at each day one at a time. We need to seize the days when we feel good, and do things...and don't dwell on what may come, or the bad days which have passed (other than to rejoice that we are over them and that we HAVE survived even that). We don't know what is in store for us....but we need to make the most of what we have.

Sometimes I do that...and sometimes I don't. I'm human, and I'm as likely to squander a day as the next person.....but every blossom is sweet and we need to look at that.

God, or the higher power, or whatever, puts us in a place at a specific time. I think I was there for that woman...at least I hope so. I hope I gave her some re-assurance. I think I gave her and her husband some reassurance or slight understanding of what it was for me (and I know that every person is different...the mantra of my support group in CT).

They had a fear that their life would never be normal again. It is normal, just a different sort of normal. We live with this forever, but it becomes a less insistent companion. I remember that I got to the point where I hated the fact that all the doctor's appointments ruled my life. Not only were there cancer related doctor visits, but the dentist, the eye-doctor, my daughter's pediatrician....I thought I'd never be free of doctors visits. While my visits to the oncologist here are now every 4 months (and I had backed off to every 6 months or was it a year when I was in CT)...it is less annoying.

So...life goes on. Different. Still enjoyable....even if I do have a teen aged daughter who delights in driving me nuts... ;) Carpe diem. Trite, but true.

Wednesday, March 4, 2009

Wear Your Scars with Pride

Purchasing clothes post-mastectomy is often a trial. It always seems that the necklines plunge too deep and either show the scars from my port, or worse, the slight gap between my chest wall and prothesis. If I find something which isn't too deep, then it is black (in which I look like I've been dead for about three months), or WAY too matronly....although I'm going over the edge into matronlyness.
It is also made worse by the fact that I don't look good in jewel, boat, or crew necklines. Turtlenecks and v-necks are what I prefer.
The other day I bought a kelly green/cream striped v-neck sweater. My daughter, ever the fashionista, loves it. The "v" does go a little deep, so I wore it with a turtleneck underneath.
She didn't like that.
I mumbled something about not having the chamosole bra I have (which has a lace part which goes up higher) clean and not having an appropriate chami I could wear with it. She snarled "WEAR your SCARS WITH PRIDE!" She noted that I had gone through the tunnel and out the other side, and if she had been through what I had been through, she'd show those scars. They were decorations of honor---bravery at it's best.
Hmmm. While my daughter is sometimes cold and lacking in empathy....maybe she has something there. Is the world ready for port scars and mastectomy gaps? The comforting thing is that the new generation, or at least a portion of it, evidently IS ready for it.