Friday, December 17, 2010

Keeping things in Perspective

I love this sky...but the powerlines and the transmission pole get in the way. Wait a minute, that's a defeatist way of looking at things! Is the sky any less beautiful for the obstructions? Not really. The clouds with the light are so spectacular that you don't really pay attention to them or the roof of my neighbor's garage.

Chemo is that way I think. This last week I was really tired. It seems like I can't recover until Thursday mornings. Which is a pain in the derriere. Friday, I spend most of the day in treatment or driving to or from....I admit, I make two stops at least so I COULD get home earlier but still, I come home and do a little housework, then I have to make dinner, blah blah blah. Saturdays, I'm usually spinning around like a top from the Decadron (a steriod I am given by IV to reduce nausea). That continues through Sunday....until Sunday night at 8:00 or 9:00 I crash. Mondays, I'm exhausted. Tuesdays, ditto. Think so tired that your eyes are watering. I wonder if this is because I am the least fit I have ever been in my life....coupled with the fact that I am no longer young, but middle aged. I never was like this before.

This Wednesday, I spent getting a bone scan (it takes 3 hours to get the radioactive material circulating through your blood stream, then about 2 hours for the scan and reading it to make sure there are no problems....etc.). I don't if that added to my fatigue, but I wasn't even able to watch my favorite show. I have other side effects as well. Side effects can differ...this last week I had a breakout on my scalp....imagine the worse case of acne on a teenager.....but on my head and back of my neck. Add that to the bloody noses, dry and sensitive skin, thirst, inability to taste things (I can taste salty, spicy, sour) and baldness.

Every week, it is the same. Except, on the 4th Friday, I have a blood draw to test the tumor markers, and see the doctor. Repeat. Until the end of April if it continues to work. Longer if not. ARGH. It was easier on Taxol for me because I got a 24 hour infusion once every three weeks for 9 months. At least I was able to bounce back. I was beginning to feel a little sorry for myself.

Today was treatment.

She walked in about a half an hour after I started my drips. Short, but full of style. Red coat with black trim, black pants and a wonderful "bucket style" hat in a suede look fabric with a flat bow in front. She exuded beauty. She took off her hat to reveal a skullcap like I wear at home. No eyebrows, but an absolutely beautiful face....round and cherub like. I heard her say something about her bleeding nose.

I told her what I was doing for mine and we started talking about Taxol (what she's on) and chemo and things. She's on Taxol, the drug I had before, but the protocol has changed and it has been hard on her system. She had the bone pain, but she's also had to have multiple transfusions and one time she had an allergic reaction to something and she began to feel like she was floating. She's been having chemo treatments for over a year and she, like me, comes in every week and has a treatment unless her markers are too low.

That, my dears, put things in perspective. It is easy to find things that are wrong and to have a pity party. That's OK. We deserve to do that every once in a while....but I think the trick is to realize that we must keep it to a minimum.....and that it could be so much worse. I think most of us, no matter how horrible it may seem can usually think up another worse's just that sometimes we need to have a stylish package sweep into our lives and show us the way. You Go KIM!

Monday, December 6, 2010

What to Do?

Last week, I had an interesting experience and I'm still trying to figure it out. A couple of weeks ago, I was speaking with a woman at the cancer center. She had been exploring alternative medicines as well as taking anti-cancer drugs (I later found out she was on Aromasin and Faslodex and had gone over to Zometa and wasn't taking Faslodex). She had had breast cancer and had a nodule on her collar bone. Just as the chemo nurse came out, she had me scribble my name and telephone number on a piece of paper. "I'll take you to him when I go next" she said. Hmmm.

Last week, she did just that. "Him" was an Amish herbalist. I went in and he asked me what was wrong. I think I simply answered that I had breast cancer. He looked me in the ey, placed two fingers on my left side and said. "Yes, you do." I can't remember if I had said a recurrence of breast cancer, but he said, "You had this before and didn't get rid of it." Ok..He had me hold my arm out and didn't really tell me what he was doing....I gathered after the first push that I was to resist. He tore off a sheet with a diet and a list of herbal remedies he wanted me to use.

The diet is what has been around on the internet erroneously known as "The Johns Hopkins Cancer Diet"....which doesn't have anything to do with John's Hopkins. It is a plant based diet. You are only to eat fresh fruits and vegetables, whole grains, nuts (especially almonds), legumes (but not peanuts), real butter and no-salt added cottage cheese. All animal proteins, eggs, cheese, sugar, salt, white flour, peanuts and any other dairy other than the cottage cheese and butter is to be omitted. I have no problem with the diet, other than the fact that being Vegan with no eggs or cheese does take some work to make sure that you get the appropriate amounts of protein, especially for a person on chemotherapy. The diet is a good one and is very healthy for you in general...but I also didn't want to become a short order cook and I will have to cook darling daughter and dear husband animal proteins.

You are also supposed to make a quart of 50% celery and 50% carrot juice and drink it each day. It must be fresh. In theory, the celery is a detoxifier and the carrot has great anti-oxidant effects. I don't like celery. I went out and bought a juicer and made my first batch, throwing in an apple in an effort to counteract the celery. Did I say I don't like celery? I was successful last night with drinking a bit more than half. The concoction is over 6 large carrots and a bunch of celery. That's a lot of carrots and celery for someone to eat in one day's time.

While the healer doesn't charge for his appointments, you can buy the herbal remedies from him. I must say that after some research after I got him, his prices are good....but I still left a substantial amount of money....more than I should have.

The herbal remedies were Red Clover, whole apricots, Food Enzymes, Parsley tablets, and Pau d'Arco. I know that if I told my oncologist, he would probably have a bird. I researched each of the items. I immediately discovered that Red Clover, largely cited as a "cancer killer, but is something that I must stay away from. Red Clover contains isoflavones which produces estrogen-like substances in the body. More research is needed into isoflavones and phyto-estrogens, but the initial responses are mixed. I remember Dr. Bobrow saying "estrogen is estrogen and you need to stay away from it."

So....I am not going to take the Red Clover. The others seem to be more benign, but part of the problem with "herbal remedies" is that people tend to take them along with chemo and other drugs (like I am) and don't think about the interactions. In some cases, we don't even know all the interactions. After all, Digitalis (Foxglove) is an herbal remedy albeit a very powerful one . Much more research needs to be done on this topic, while in other areas it has been shown that some of the remedies just don't work.

Part of me says I shouldn't even look into this at least not right now. I will say that I can't bear the thought today of drinking any more of the carrot/celery mixture. In fact, my stomach is quite upset today.

The lady I went with had had advanced breast cancer and following this procedure and other drugs, her large tumor has subsided. Part of me says that this may work.....the other part of me says that I know that the Abraxane is working (the tumor markers fell substantially), and that perhaps any more exploration of this should wait until after I'm done with the Chemo in April. It is a puzzlement.

I do believe in the mind-body connection. Some of the other things which have been put forward are completely unfounded upon further investigation. Do I believe that this healer is trying to hoodwink people? No. He believes in what he does and some people probably have been healed. Others haven't.

I don't know how or why I happened to fall into this position, but it really is making me think. The world cancer patients live in is often scary and it isn't just because of the disease and the treatment one gets through western medicines.

Monday, November 29, 2010

Out of the Mouths of Thoughtless People

As old as I get, I never cease to be amazed by people. In September, my neighbor invited me to a "get to know you session" from a service organization in which she is active. About two weeks after that, I told her that I assumed it was a membership driven thing and that I was putting all such activities on hold and curtailing some of my other activities while I am fighting this bout with cancer.

Last week Wednesday, I got a telephone call from one of the members of the organization asking me if I wanted to join. I told her that as I was currently undergoing chemo for stage IV cancer, I am not joining things at present but would get back in touch if something changed, and that I was fairly close to the person who invited me and would work through her. This lady's response was "OH! You're one of the lucky ones!" Lucky? I'm undergoing my third series of treatments, the second for a stage IV diagnosis, and I'm Lucky???? Ok...So I AM lucky, lucky that I was born with more brains and sensitivity than to say to someone who has cancer that I think they were lucky. I will also admit that I am lucky to be able to draw my next breath....but I doubt that she would take to kindly to me saying that she was just as lucky.

Which brings me to another rant.... When I posted about my first treatment with Abraxane, someone left a comment telling me that I needed Vicoden for chemo pain (what pain? I only had pain for the first two weeks in the area of the cancer, pain is NOT a given for chemo as this person was intimating) and that it was available on line without a prescription. ARE YOU FRIGGIN NUTS???? Even if these drugs were pure and on the up-and up, they should ONLY be dispensed by a physician who is following you....and on top of it, narcotics make me really queasy.

The next wonderful thing was the comment left when I wrote about losing my hair to chemo. This was another blogger who was trying to get me to buy his product for hair loss. Well, dang.....that's all I need...slap a little rogaine on my head and that will prevent chemo hair loss. Well shoot. The thing which annoys me about both of these things is that there doesn't seem to be a place on blogger where I can report these nimrods to get them pulled.

So...long story short....I'm feeling well and as feisty as ever even though my taste buds are fried and I seem to be tired. Enough so that I'd love to smack all of these people who have no ability to keep their mouths shut and their money grubbing hands off people who are vulnerable and may be looking for some kind of relief. So I guess I'm doing A-OK. Oh yeah, and I'll get my first report on the tumor markers later this week. :)

And thank you for the opportunity to rant. On the sweeter side, my daughter called one of her friends who shaves his head every two weeks to come over and buzz my head....she couldn't do it because she was scared to, but she didn't want to see me scratching my head as the last little bits fell out. So....he came over on Sunday and did a really nice job. For the life of me, I can't figure out why any guy would voluntarily keep his hair 1/4" long in the wintertime...but then again, he wore his knit cap all the while he was in the do I.

Monday, November 22, 2010


Not long ago, I attended a lecture by Kristin Armstrong. Kristin is a motivational speaker, an author and the ex-wife of Lance Armstrong. My husband and I, being bike riders, had followed Lance's life especially since his diagnosis of advanced testicular cancer came at about the same time as my stage IV diagnosis. In fact, we both were on the same chemotherapy.

In her talk, Kristin brought up how important it is to develop a strong group of friends. Not only was it important to your regular well-being, but in times of great difficulty, you would need to lean on them and they would support you. I felt a little sad about this as I am about 10 years Kristin's senior. I also knew that while it was easy for me to make friends when my daughter was in elementary school, moving down to Ohio when she was in junior high made things a lot more difficult. I wondered about how I would approach this new diagnosis knowing that the unbelievable amount of help I got in my second diagnosis in 1998 was so much more than it was in 1994 when I had only recently left work and hadn't developed much of a support system outside of my workplace....and family was far away.

I thought of this comfort quilt I made for Teresa Rorhbach to give to her neighbor who was undergoing chemo. What a great gift!

It wasn't long after I was thinking about that, and pulling out my healing quilt which was made for me in 1998 to take down to my treatments in Kettering, when this knitted prayer shawl came in the mail. I was dumbfounded. While I haven't been able to make many connections with the church here, in fact for the most part I find it pretty cold, this prayer shawl came from St. Andrew's Episcopal Church in Meriden, Connecticut. I know the ladies who work with the prayer shawl ministry there, but never in a million years would I have thought that they would send a shawl that they had made with love and prayed over and sent down here more than five years after I left Meriden. I was dumbfounded.

Getting chemotherapy often makes you cold because sometimes the drugs are refrigerated, but even if they aren't room temperature drugs are colder than your body temperature. In addition, in my case, I usually wear turtlenecks and sweaters, and I can't wear those for treatment as they need to be able to access my port. So, having a blanket or something is very nice.

This particular quilt was made for me by a bunch of my quilting buddiesin Meriden, spearheaded by Lynne Grobsky in 1998. Each block was given to friends and family to be signed. This one was from my neighbors and it says "Question: Weed or flower?" as I was often called over to identify plant material.

Marina Mozzi made this poison dark frog, outlining the spiritual powers that frogs hold.

My brother, the small grain farmer in Montana, made this one. "From the Atlantic, wide open spaces, to the Rocky Mountains, " and shows a tractor pulling a seeder and is "signed" even by the dogs, as was the weed or flower block. (Dogs like me. :)).

The last block is one from my sister with two pink ribbons, either one for her and one for me, or for my two trips to the chemo bar at that point, I don't know...and with scripture on it.

All of these things are sort of miraculous and the thought and effort that went into them makes getting treatment a little easier to bear. I urge you to find a support group before you need them...and work to support others. The comfort or healing quilts DO make a difference....even if only to fill us with wonder.

Friday, November 19, 2010

Hair Today, Gone Tomorrow

Although my weird sense of humor brings to mind the cartoon I saw as a child....and a later joke...Hare today, goon tomorrow. I can't remember if it was a Popeye or a Looney Tunes cartoon.....

Yesterday, I started losing my hair. Not as much as I did when I had Taxol and CAF, but enough. I hemmed and hawed about shaving it. And then I didn't do it.

Today, it started some more, and it was no longer fluffy, but flat....and I hemmed and hawed some more. It's funny, the last time, I had no problem going into the bathroom with my electric hair cutting razor and shaving it. This time, I wasn't so sure. Maybe because it had been 13 years instead of 4, I was having second thoughts. The clincher though, was when I was baking and I was terrified that I was going to lose hair into what I was cooking. And of course, my scalp began to be a little unhappy.

It's funny....when it begins to go, I can only describe it as hair follicles as having little individual headaches. I think it is from the hair sort of pulling and dropping.

When I went into treatment today, it was funny. In the waiting area, I sat next to a man and his wife. He was being treated for multiple myeloma. Out of the blue, he turned to me (and mind you, I had all my hair at the I did in the first picture) and he said, with tears in his eyes, "The hardest part about this so far has been losing my hair.....and I don't know why." He had gone into a barber shop and had it cut short, but stopped short of it being shaved, and I would say his hair was about 1/4" long. He was 72, and I must admit I was of somewhat a sexist bent in my thinking as I wouldn't have imagined that that would have been as much of a problem for him.

I think, perhaps, that as long as you have your hair, it creates a barrier. You are not obviously fighting cancer, even though many chemotherapies now don't cause you to lose your hair, there are several, particularly "the big guns" which do. Once you cross that line, you are outwardly fighting cancer.....and that can be tough.

Don't get me wrong, having no hair is COLD. Especially in the winter, even inside. For a woman, a lot of femininity and who she is is expressed through her hair. For many women, losing hair is more traumatic than any other part of the cancer process. It isn't for me, but I really understand where women are coming from. The kicker is, many, if not most, insurance companies do not cover wigs as they are deemed "cosmetic." is a not great shot of me as I appear now...all shaven and least I'm not the cow with the crumpled horn!

Saturday, November 13, 2010

Wigged Out

I never thought that moving to the greater Dayton area in Ohio would be putting me in the netherworld as far as wigs go. At least it seems that way.

When I first had chemo in 1994, I was blessed to have been referred to a wonderful wig guy in Hartford, CT. In fact, I went to two shops, but the second was...a little odd. You went to his place which was ONLY by appointment. You were his only customer when you went. When I went to the other place, people were coming in for hair extensions, etc. I had one other cancer patient who was actually younger than I was. While we were there, someone else came in who couldn't understand why the two of us were imperative about getting a good wig, one which suited us, at a price we could afford and ASAP. So, when I went to this other guy's place, I found it much better.

He spent a lot of time and found this wig, which wasn't cheap. It is a synthetic wig, but a high quality one. It matched my real hair perfectly...and while it is hard for most people to fit wigs while you still have hair, he did a good job. He also hand stitched the netting and made adjustments so it was a perfect fit and was comfortable.

When I had cancer the second time around, I had saved my wig which was a good thing. The insurance company, a major one, had stopped paying for wigs for chemo patients because it was cosmetic. So, I went back to the wig guy and he styled it for me again and I was good to go. Because I was stage IV, I kept the I didn't want to be without it if I needed it again.

Fast forward to now...13 years later. I still have the wig, but since I'm a lot older, I thought I should have it styled a bit shorter. I also wanted to wash it. In looking at it, I noticed that I had some singeing...obviously from opening an oven door while wearing it, another reason to get a trim.

I needed to get some wig shampoo because I needed to wash it, after all, it probably had dust in it and I didn't wash it very much when I did wear it because every time you wash it, you shorten the lifespan of the wig. They usually suggest washing it about every 2 weeks if you wear it for 10 - 12 hours a day, and I didn't wear it that much. Washing must be done with wig shampoo (products for human hair don't work well...think of what happens to baby doll's hair when their mini-moms wash them ). Wig brushes should also be used, and when not worn, they should be kept on a wig stand which is ventilated. Mine is a wire one. The openness, rather than a styro-foam head, allow the wig to breathe and dry out as your head sweats.

I called around trying to find some wig go. I'm going to check at one place which sells wigs and mastectomy items....but we'll see. I wasn't too impressed with that aspect of this place when I was there last. I loved one salon's response "take it back to where you got it from." I'd love too. Too bad it's in Connecticut.

I finally got someone who would cut it....but it's a professional hair stylist, something some people advise not to do, but there's a dearth of people who will do it around here. Ask around. Try to find someone who has experience and is trained in working with wigs. Hopefully, I'll be able to add some curl to the bottom of my wig again so it turns under as a page boy should...only this time it is about 4" shorter.

The hairstylist suggested buying a wig with substantial human hair...the only problem is that I don't think she's aware of how expensive human hair wigs are. I still think that getting the most expensive wig you can afford is probably the best bet--they will probably look the best. Check with your oncologist for suggestions. Call the local chapter of the American Cancer Society to see if they can suggest something.

The American Cancer Society has a catalog called T.L.C. which has a variety of wigs and artificial hair in a wide range of prices . Check here. They also carry a lot of hats and lingerie items for lumpectomy and mastectomy patients.

For more on wig care, look at these websites: Feke Wigs and Ace Wigs. Go to an American Cancer Society's "Look Good, Feel Better Program." They will give you more tips about the care of wigs, using cosmetics (including a lot of samples which are very helpful) and also ideas about using hats, scarves etc. It's a great program and is free of charge to cancer patients.

And try not to bake with your wig isn't pretty when the tips melt. :)

Thursday, November 11, 2010


This week has left me a little unhinged. The Abraxane seems to be least as well as I can tell. I have been feeling winded, short of breath, which I suspect is the effect of losing significant red blood cells. The red blood cells carry oxygen, so if your counts are low, then you feel tired and out of shape.

The out of shape part is sort of worrying me. In my previous battles, I had been in far better physical shape and therefore had less side effects. I am in pain, in my shoulder and in my chest which I am fairly sure is from the cancerous lesions. Part of me wonders if I can pull out from this as before, I didn't have pain. But then again, my hip doesn't bother me all the time, just when I overwork it, so perhaps there is hope there too.

I will find out what my blood markers when I go in for another treatment tomorrow. I don't think he will check my tumor markers until the day after Thanksgiving. I've been struggling trying to get areas of the garden cleaned up...I can handle only one section a day. My daughter gets after me, but if I don't do it now, I don't know what I'll be like in the spring.

Tomorrow I will drive myself to treatment, as I always did when I was in Connecticut. I think it is easier that way and I will continue to do so as long as I am able. It is difficult to get my family to understand that I am not able to do as much as I want.

I am also a little unhinged as they seem to have developed a sort of hedonistic approach. I keep on hearing the two of them say "Life's short." While I have wanted a new stove (ours is 1989 and while it works ok, it isn't level, has been severely beaten up by previous owners, had pitted and nasty burner pans, and the oven window is obscured by some sort of guck which has become mired in between the layers of glass and I can't clean it. On the other hand, said daughter who got an interview request for the University of Akron based on her essay and application, has yet to call and set the date and keeps on moaning that she doesn't know if she wants to go to Honors College with "all those braniacs." She has very little understanding that she is smarter than the average bear.

Tomorrow, I hope to talk about my adventures in wigdom. Until then, I will leave you with the words of A. A. Milne as voiced by Christopher Robin to Pooh. One of the Batty Binders quilters sent this to me on a fabric post card:

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think."

Saturday, November 6, 2010

In My Daughter's Words

My daughter is a chip off the old block...and by that, I mean she is the feminine version of my husband. I've been worried about her and how she is dealing with my recurrence. She, like my husband, hasn't been talking to anyone about it. She only told one of her friends. I've spilled the beans on it to more than she has.

She, and my husband, tend to just stuff it. They are scared, but they won't verbalize it. Often, the way my husband's family deals with significant troubles is just to put themselves into a state of denial.

My daughter is a senior and is applying to various colleges. This is her essay in her application to honors college to a public Ohio University. I'm sharing it with you because I think it is pretty good, especially for a girl who hates to read and despises writing even more (see? none of my genes are present!).

"I want to know how to get the most out of my time on earth. Albert Einstein once said “Once you stop learning, you start dying.” There is no point in continuing if you know everything, and do not learn from your mistakes. I want to seize the day. If a day goes by where I have not accomplished something, learned something, or most importantly had fun, it is a waste of precious time. We are not immortal, and eventually we will all die. For all we know, we could die tomorrow in a car crash, or next year of cancer. Instead of being afraid of death, I want to learn to live life now. When I die, I want to know that I have lived a fulfilling life, and done all I could possibly have done.

Conversely, I have not always lived my life with this philosophy. This realization is rather recent, and my relationship with my mother has played a huge role in it. Until this year I really didn’t have much motivation. I didn’t have a drive to want to learn, everything I ever really wanted to know, my mother already knew. If I had a question, I would ask her, and she would know. Most of the time I found her wide range of knowledge annoying. I would want to know who the third President was, or when the first airplane was made, and I would get an answer to my question, and all else there is to know on the topic.

Unfortunately, right before my senior year, in May, my mother’s cancer returned. In 1994 she had it in her breast and underwent chemo and radiation. In 1997, it returned as stage IV, in her breast and pelvis. After a tough fight, as I moved on to first grade, she moved on from the disease. Until this year she has been clean, that’s thirteen years, cancer-free. Sadly, cancer never really leaves and next week she will undergo her first round of chemo. It has spread to her ribs, sternum, shoulder, and hip.

Knowing how cancer works, and the intensity of what my mother is fighting, I am smart enough to realize she will not be around forever. I have to learn how to still ask questions, but find the answers on my own.

What I really want to know, you can not take a class, or read a book to learn. I want to know how to be strong, and fight like my mother. I come from a line of strong women, women who speak up for themselves, make their own money, and make their own life. They do not need anyone to help them through it. I am still young and do not feel like there is anyway I can live up to these women. I have a huge legacy to follow, and have already wasted precious time.

I am not one to lie, during the early years of my schooling I did not challenge myself much. My personality is not competitive and as long as I got all A’s, my parents were satisfied. I had a care free childhood. Even my pre-teens, in a private school weren’t terribly challenging. Until sophomore year, I didn’t know what hard work was. I now know what it takes to struggle, and learn something new. Battling through new material has been draining, but I feel refreshed, and renewed, everyday.

As I am also a cross country runner, I know what accomplishment feels like. Every week I get done with a ten mile run and feel fulfilled. Lately, learning has given me even more of a rush. I feel as if every moment I spend not challenging myself, I am wasting my time.

My time is precious. If I am to live up even slightly to my mother’s legacy, I should have started studying a few years ago. Actually, I should have started reading much more in third grade. I am not the common overachiever. In fact, I would describe myself as faithful procrastinator. Strangely, there is a drive in me, probably from my mother, that makes me dive into my work and finish it. Once I get into something like a math assignment, organizing a team event, or writing a paper, I put two-hundred percent effort into it. This has always been the case.

Again, I am not your typical overachiever. I did not apply to Harvard as a “reach school,” nor did I take a chance at North Carolina. I want to be at a school that fits me, and my lifestyle. No matter where I end up, I know I am going to make the most of it. Being a part of the Honors Program is a step toward my future, full of challenges and life. "

I guess she'll be least this is a good step forward. I'm pretty proud of her. She's got a lot of growing to do, but I think she'll do just fine. Maybe she is a chip off her mother's block as well.

Friday, November 5, 2010

Ports and Paclitaxel protein bound

On Wednesday, I got my port, and yes, I am happy it is a Bard subcutaneous variety. Rather than a surgeon, this time a Radiologist made the placement. The port is nestled under my clavical and the line runs to my jugular vein. I told the doctor about the extra stitch (hey, I'm a quilter! Stitches are important!!!). He was receptive, and said that generally, ones radiologists put in don't flip, but that he would be happy to stitch it in firmly.

He had to put it above the area where the other port was as that one was sub-clavical and went to the veni-clava. So...more scars and bumps. Maybe this is some sort of tribal scarring we are supposed to get? Maybe the gurus could work on something to make them a tad more attractive....

Somehow I feel like a vampire has claimed me. Hmm....aren't Vampire's immortal? I don't want to be immortal, but a few more years sounds pretty good.

There isn't really any discomfort, except that the tape sort of pulls at my neck. I feel like a horse with a martingale set of reins, which sort of keep the head from rising as part is attached to the girth through a D-ring....supposedly to increase the contact and ease of communication. I don't remember much from my horsey days....that was a long time ago, but I can say that this lets me know if I am moving my head too quickly.

It did take me a while to clear the sedatives from my system. I am resistant to most sedatives, to the point of being completely awake and feeling it when I had my colonoscopy. I warned them, and indeed, again I was awake but it certainly didn't feel bad. I just was groggy when I went home and well into the next day.

Today, I got my first dose of Abraxane (Paclitaxel-protein bound, the actual description of the drug rather than the brand name ). I had some irritations, but none caused by the drug. First, my appointment was for 10:00. At 11:00 they finally took me in to draw the blood for the CBC. As I sat there, the nurse asked me if I would like a blanket or anything else. I thought a glass of water sounded good, and she asked if I wanted ice. OOOH. I love ice water.

Then, they started a saline solution with the steriod, Decadron. In the past, I hated Decadron as it make me not able to sleep. Harumph. Then they put another bag of something else on. At 1:00, that bag finally finished. And I waited as the alarm on my pole was going off. And I waited. A nurse looked over and came over and asked me who my nurse was. I told her and she said, oh. She's at lunch, but she's supposed to have someone cover for her. 20 minutes later they came an hung the bag of Abraxane.....which only takes 30 minutes to transfuse. Hmmmm.

I didn't really come prepared as I was told that the drug "only takes 30 minutes so you're not there all day." (!!)." So....I sat there. Eventually, my two neighbors joined, well, she's a little pushy, which I have noticed is not the tactic to take in this office. Next time, I plan on going it alone, with quilting stuff, water and quilt in tow. That water and blanket? It never came.

However, so far, so good. I'll keep you all posted on side effects.

Tuesday, November 2, 2010

Any new port in the storm

Sorry, no pictures. My daughter is snarling at me because I couldn't save her Spanish IV homework on the upstairs computer and according to her, that's the only computer which an do the Spanish accents.....of course, it is also the computer which has PSE and my photos on it.

Tomorrow, bright and early, I get to go to Dayton to have a new port put in. Having had CAF in 1994, my veins were shot. In 1998, I had a port put in and had it removed just 2 years ago. After a bunch of screw ups at the doctor's office (none having to do with the doctor, just his clerical staff), I will start Abraxane on Friday.

I keep on trying to remember what the port felt like. A port makes it easier to access the vein. There's little membrane and that's where they stick the needle. No digging. No diving or rolling veins. Two types of ports are commonly used, the Hickman (which is not subcutanious) and the Bard, which is. Hopefully, I will have a Bard because you can shower, there's less problem with infection and that's what I'm used to.

My surgeon was good. He added a second stitch which prevented the port from flipping, a common problem. He never had a port flip, and the other surgeons were amazed, until he told them about the extra stitch. He said that it was a small matter of time, but for the patient made all the difference in the world. He explained this to me after he kept on saying "Mine don't flip." I thought he was being arrogant, but after his explanation it seemed to make sense. Mine was deep, it was difficult for some people to get if they didn't take the time to feel the edges, but it always flowed well.

I remember waking up in the recovery room and being allowed to put my clothes on. When I bent down to get my pants, all hell broke loose. I started bleeding like a stuck pig. No one told me I should remain upright....but I'm still wondering how one puts on pants by oneself without bending over...or socks for that matter.

I was only partially dressed and had to ask the lady who was in the bed opposite the bathroom door to get a nurse, I swear she about fainted. I was fine, just putting as much pressure as I could on my chest. They called my surgeons assistant who was a BIG guy by the name of Dr. Aziz. Dr. Aziz had HUGE hands and he put one on my back shoulder blade and the other on the front where the port was and pressed. HARD. I remember asking that someone get a chair quick. Why? I was on the verge of passing out. I had Dr. Aziz's handprint on my chest for about a week.

On Friday, I'll start Abraxane (Paclitixel in a human albumen carrier....the human albumen is derived from of those "products" harvested from all those good people who are able to donate or sell their blood. We'll see how I do. Hopefully, as good as I did on Taxol as they are both derived from the Pacific yew.

I must admit, this is a bit scary. I never have had the discomfort from cancer as I have from this one. I fear that they didnt't move quickly enough. Hopefully, this will be able to stop it in its tracks. I'll get a 30 minute infusion weekly for 3 weeks, then I'll have a week off before starting again. I'll continue as long as it looks like it is working. I'll lose my hair, again.... The biggest drawback is that people complain of fatigue. Hopefully, I'll be able to breeze through that, but I am older than I was when I first got it. There are other things that the manufacturer note as side-effects. However, the only other one my doc mentioned as being common in his office is neuropathy in the hands and feet, which I also got from Taxol, only that never went away.

We'll see. Always an adventure. Trying to get the outside taken care of with digging and lifting as best I can before all this as I won't be able to do it for a while. Hopefully, the goldfish pond has stopped leaking (we did a repair which had pretty interesting happenings) and I got the big ceramic pots in good enough shape to weather the winter. What dahlias are dug are dug. I'm not going to be able to dig any more. Oh well!

Monday, October 25, 2010

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.

Sunday, October 24, 2010

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 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.

Thursday, October 21, 2010

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."

Thursday, October 14, 2010

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?

Tuesday, October 12, 2010

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.

Thursday, October 7, 2010

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 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.

Monday, October 4, 2010

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.

Saturday, October 2, 2010


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 of

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.

Monday, September 20, 2010

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.

Saturday, September 18, 2010

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 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 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.

Monday, September 6, 2010

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.

Tuesday, August 31, 2010

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.

Sunday, August 22, 2010

Everyone's Experience is Different

Last Friday, I had my monthly Faslodex shot, Zometa IV, and check up. While I was getting my IV, the lady next to me was having trouble with her port. They needed to draw blood as they had accessed her port before doing all the blood tests she needed. The port was being obstinate. Material would flow in, but she couldn't get it to draw back enough to fill a vial.

Now, my port was often a trouble maker. Not really a trouble maker, but it was hard to access and sometimes I had to sing "Up on the Hill was a lonely goatherd...." with the yodeling part from The Sound of Music. It sounds silly, but it worked...and at least I had a decent voice so I could pull it off. This lady wasn't so inclined.

So, they had to stick her again for the blood draw. Is it my favorite thing? No. Is it do-able? Yes, and it is a necessity. I was amazed at how this lady complained and whimpered. You'd think she was having her arm amputated. I know how awful it is when phlebotomist doesn't hit a vein and digs around. But this wasn't the case. I'm also not happy when they put a catheter line in as that doesn't feel too pleasant either. But none of these warranted in my opinion her reaction.

Then, when I was in the room to get the Faslodex, the nurse kept on apologizing for the "stick" she gave me. Really? That is a tiny needle. I'm used to the big mamas they use to draw blood, access my port (when I had one), and put int he IVs. Big. Pokey. These little needles for injections are a piece of cake even though they do put in a lot of material and it is very thick. For me that is.

I was thinking about it and I realized that not everyone can handle pain. I know I have a high least it seems so as I don't complain about has to be really bad before I do. So, I have to remember that others have low tolerances for discomfort.

I really feel sorry for them. I promise I will try not to be judgmental at the yelps and whimpers other people give.

Wednesday, August 18, 2010

Random thoughts, Random issues

Daylilies only bloom for a day. Too bad most of us don't think about that earlier in life. Today, my husband and I went to the Miami County Fair, after I had worked in the garden for about three hours.

I didn't think I did all that much...I dug out two perennials, hauled in some soil and back filled around the pond, and planted 4 new perennials. Then, I mulched it.

As far as my normal gardening days go, this was really light. At the fair, we walked around for a couple of hours. By the end of the time, my hip was really hurting. I realized that perhaps I needed to really concentrate on losing weight so that the joint isn't under so much pressure. I also realize that just possibly this pain won't go away over time and I won't be able to be as active as I once was. I don't think I'll ever be able to run again and I don't even think that hiking, something my husband and I used to do before my daughter came along, will be in the picture. Thinking of myself wheelchair bound is just not something I ever considered, not that most people in their pre-30s ever think about something like that.

But, that might not be the case either...even so, it is sobering. It is possible, that if I survive this recent go around, I will just have to be careful. I'm not sure about if the damage or pain I'm having now is directly related to cancer, or if it is as a result of my loss of estrogen at age 38, the calcium issues (loss) from chemo, and the damage to the area from the high-dose radiation. In addition, because it was the acetabelum (the cup in the pelvis which the rounded head of the femur rests in) it is possible that it is just the problems associated with a break in that bone (nerve damage, muscle issues as well as pain because that part bears so much pressure).

I have decided that whenever the hale and hearty male friends of my daughter show up to go swimming, I am going to make each one of them dig me one hole...or do something else which requires putting foot to shovel. One of her friends offered to help me when he found out I had cancer...but never showed up until I messaged him on facebook (I don't think these kids know how to communicate other than texting or facebook) and asked him when and how much. $10 per hour, and three hours of labor I got some of the things done, but I have about 2 hours more of work to do.

I find it amazing that although these kids don't have jobs for the most part, or if they do, they are for a few hours rather than during the daytime, that I can't hire them for a bit of work. Now, I know that this sounds like I am an old fogy, and I suppose I am, but I worked for less than minimum wage when I was their age. I am amazed that making $2.50 per hour OVER minimum wage won't bring them in....and when I say digging, I don't mean hard digging....if it weren't for my hip, I'd do it myself.

I'm about ready to pick up someone who sits out on the highway exit with a "will work for food" sign....if it weren't so scary to do that..... Maybe hanging a "handicapped" sign off the end of my nose, or as a medallion on my neck might do. At present, people don't know there is anything wrong with me....My daughter suggested that I get an handicapped license. I would, but I don't need it ALL the time...just more than I'd like to admit. It is nice that she thinks about where I'm parking and how I hobble at the end of the college campus visits we make. Oh well, at least I'm still taking in breaths. ; )

Thursday, August 12, 2010

Why I blog

Not too long ago, I received a comment on this blog asking me to fill out a survey about breast cancer blogs. Being the sort of person I am, of course I went and completed it.

One of the things which struck me, however, was the apparent supposition that the person who blogs about breast cancer is to illicit support, inform people of their own particular current issue, that sort of thing. I didn't see anything coming through the questions as far as the reason I chose to blog.

I started this blog because I knew of very few people who had had Stage IV breast cancer and survived, and I don't know anyone who has had it and been around as long as I have. That's not to say that they aren't out there, I just don't know of any.

I also wanted to give people hope, especially for those who have been recently diagnosed. Of course, there are those who follow this because they do know me or that they know of someone else who has been in similar circumstances.

Since being diagnosed with my own recurrence, I have often hesitated to post about my current struggle. I just didn't want anyone to get depressed that I am now going through this too. I still struggle with that...but I also see this as an opportunity to tell about how the drugs are working on me, and some of the things I have found out as once again, I'm going into an area where I don't know of anyone who has been in similar circumstances to me.

So...I'll continue...until I think that I don't have anything pertinent to share, or it just becomes too hard. Rest assured, if you don't hear from me for a while it is probably that the job of raising a teenager, keeping a household running, maintaining my own business, gardening, and all the other things I do have been interfering with the blog. :)

Saturday, August 7, 2010

Sometimes doing the right thing leaves you exposed

I've written before about the Army of Women posting a research study for young women who were diagnosed with breast cancer. You had to have been under 40 and pre-menopausal. This was one of the first studies that I have ever qualified for, and something I really wanted to participate in.

I was especially interested as there had been no breast cancer (or cancer of any type) in my family up until me, and then my sister who is 7 years my senior was diagnosed with it about 5 years after I was. I want new information to come out and hopefully treatments/preventative measures so that my two nieces and my own daughter don't have to go through what I have.

I also thought it would be good as my mother and father are both living and both are in their 80s. The combination of my sister and my parents just might give some insight into why this happened.

I filled out the permission forms and the history and had blood drawn and sent off to Washington University in St. Louis. It was not without some trepidation that I filled those papers out. You see, there isn't anything to protect me or my daughter from having insurance companies in the future deny her treatment based on genetic testing information which might show her to have some sort of gene abnormality which would make her at risk for getting this disease.

I find this a travesty. I didn't like it, and I know I am putting her future at risk, but I feel that I'm putting her future at risk if I don't step up to the plate and participate. We should be protected. No one should have this being held over their head, particularly if one is being penalized for doing something for the greater good.

In addition, even with a positive genetic factor, it doesn't mean that a person who has a gene abnormality which is connected with cancer has a 100% chance of developing the disease. For some unknown reason, sometimes these "triggers" are not tripped. But I certainly want to put a bullet in this disease. I guess I'm going to have to write my congressmen, but I feel like it won't go any where.

Saturday, July 31, 2010

Not Every Cloud Brings Rain

Imagine that there is a watermark on this picture....for some reason I'm having trouble with Photoshop getting the watermark to stay. grrr.

This week has been a little tough. Not only have I been having pain in my hip, but yesterday I started to have some discomfort in my ribs as well. Toss in the fact that I also discovered that I have Lyme disease (and am now on antibiotics but feel tired and often dizzy), its been a little rough.

Usually, I keep my head about things, but the rib thing really made me a little nervous. Since I couldn't remember how much calcium and vitamin D I'm supposed to be taking (I finished the bottle and threw it out and then talked to my sister who is taking LOTS of both) I decided it was time to call my oncologist and ask him about the dosage and also to give him the heads up that I was feeling something in my ribs....which is one of the locations of the new metastases. I figured that would give him some time to think about what to do next if the Faslodex wasn't working.

He called me back within a couple of hours. and told me that for some reason, even if Faslodex is working it doesn't usually show up right away. He said that he new of cases where they had discontinued the drug, and then two months later they saw improvement. He also said that he has had very good results with his patients on this drug and didn't have any bad cases to report, but that he had several patients who had been on it for 6 years and were still doing well. why don't we know about these things? I think part of it may be that quite often what reporters and the media are looking for are cures. What Faslodex does isn't curing cancer, but making it be a chronic illness. Just another case of keeping us patched together until we can find something better.

I'll take it. And I'm very grateful I have a doctor who is willing to listen to me and to give me encouragement even when things look rather dismal. I'm not usually one to jump to conclusions. I'm also not one to always look totally on the dark side. However, since I have only known this doctor for 4 years, I never know how his office perceives me.

Thursday, July 22, 2010

The Tattooed Lady and other laughs

The road for the cancer survivor is often long and bumpy. However, it isn't without least if you look for them. Today, I actually experienced a new giggle.

Every year, I try to go and get a full body check for cancer by a dermatologist. I decided that I would switch to the local guy my daughter has been seeing.

When I received radiation therapy to my breast when I had my first bout with breast cancer, I was tattooed, 4 (or 6, I can't remember) little black dots were put on my breast in order to mark the coordinates for the radiation beam. (I asked them for a mermaid, but they said no, that was a little over the top. Darn.). Ordinarily I don't think too much about them. In fact, when I had my mastectomy, some of them were removed with the breast, but I still have two small dots.

When I was at the dermatologists for my first exam with him today, he looked at me and said "What's with the tattoos?" Uhhh...well, you see, I was going to get a mermaid, but I chickened out after a couple of dots...." Yes, I really did say that...but I followed with the real explanation.

I told my daughter when I got home about the exchange. Her eyes grew very wide.."You have a tattoo???" she asked incredulously.... I told her yes, but they were top secret dots. For a moment, she almost thought she had a really cool mom, but then I had to go and spoil it for her and prove once again that I'm not cool, just an aging nerd.