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 scenario....it's just that sometimes we need to have a stylish package sweep into our lives and show us the way. You Go KIM!

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 all...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.

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 house....as do I.

Comfort

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.

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 time...as 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."


So...here is a not great shot of me as I appear now...all shaven and shorn....at least I'm not the cow with the crumpled horn!

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 wig...as 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 shampoo....no 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 on....it isn't pretty when the tips melt. :)

Unhinged

This week has left me a little unhinged. The Abraxane seems to be working....at 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."