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."

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 OK...at 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.

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 me....one, 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.

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 blood...one 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!