Lymphedivas

For the last several months, I admit to having lust in my heart....but I have to wait.  When I was getting therapy for my lymphedema, the therapist showed me these AWESOME lymphedema gloves.  Designed by a lymphedema patient, these sleeves and gloves ROCK!  You've got to take a look:

http://store.lymphedivas.com/store/pc/home.asp

They aren't cheap...but I don't know how much the regular ones cost....But....when I get enough money I'm going to get me a set!  I think I want the Lotus Dragon tattoo....but I could also get the purple paisley, the White Vercache,  the Sunburst, or the Nouveau.....but I wish the Nouveau was in turquoise or purple....Hmmm...things to think about....and to save my pennies for!

Maybe Santa would be so kind....

The Mrs. Tiggy Winkle Effect

 My hair has come back thicker....but with more grey.  Maggie and Lourdes keep on saying that it isn't grey, it's "ashy".  There's a lot of light colored fluff up there....and when I take a shower and wash my hair it sort of sticks together in funny little pointy things.

I look for all the world like Mrs. Tiggy Winkle.

 Here is Mrs. Tiggy Winkle for those of you who might not have read Beatrix Potter beyond the Tale of Peter Rabbit.  Mrs. Tiggy Winkle is a hedgehog who was a laundress in Miss Potter's stories.  She was based on a Scottish washer woman....and frankly, because of the roundness and the pointy hair, I feel very much like Mrs. Tiggy Winkle.

One good thing though is that the steroids are finally leaving me. My face is much less puffy than it once was. I still need to lose some weight, but I am 20 pounds lighter than when I started this most recent ordeal.

Here's a real hedgehog....and I really do think my hair resembles this....although at present, it is getting long enough to start curling so it stands out, much like the wisps which poke through Mrs. T-W's bonnet.

Every other time my hair has come back, it has curled ...tightly....so, this will probably do the same.  My daughter gets great amusement by running her hands over my head as my hair is very fine and therefore soft.  It's really thick, and there's a lot of it, but it is as soft as baby's hair right now.

Take a look at this lovely little example of Mrs. Tiggy Winkle.    As I have said before, living with cancer is always an adventure.

Things that Get My Goat

No, this goat hasn't been bisected....it's the electric fence separating him from me....and frankly, given those horns, I'm a tad grateful for it.

Dawn (Calming scents) left a comment on my previous post.  I went to her blog and discovered that she too has advanced breast cancer.  I'm not liking how she found out (advanced pain) and I always dislike it when doctors start saying "if you're lucky, you'll have (fill in the blank) amount of time.  Why? No one knows.  We could get hit by a car, eat a bad piece of turkey, or have a heart attack.

In addition, we could have amazing genes and amazing ability to recover.  Heck, we might even be a  recipient of a miracle or two.

I also don't believe that "God plans all of this.  He wouldn't give it to me unless there was a plan."  Well, balderdash.  If God (or your higher power or whatever) is supposed to be a gracious and loving persona, then HE (or SHE) doesn't WANT us to have pain and suffering, we are the objects of a cosmic crap shoot.  However, I do believe that "God", "Your Higher Power," or whatever, can help us deal with a bad hand of cards AND it can be turned to something positive.

Putting us intentionally in this situation? No way.  I don't know of any father, heavenly or otherwise, who purports to be loving would want us to be in the dire straights that we as mortal beings find ourselves in.  Yes, I'd love for everyone to die of old age in their sleep, painlessly and seamlessly, but that seems to rarely happen.

We also have a part to play in how we want to deal with this....help others, take it a day at a time, or not.  Sometimes it's hard.  OK, a lot of times it is hard, but it is where we are at present.

I think I've probably said all the above before, but I really do think it bears repeating.  Discover how strong you are.  Discover how giving and forward looking you can be.   Do what you can,  grumble at what you can't, and see what else good is around the corner.  And yes....God or your higher power or Earth Mother, might just have a hand in the good which comes out of it....and so may you.

On the Horizon?

Today a friend posted on facebook about some research that an Israeli firm is doing on making a cancer vaccine.  It is unusual in that it will be used as well for cancer treatment.  From the description, it sounds similar to the one described in the Roger Williams Medical trial that I entered my name in for the pool of guinea pigs.

Here's the link:  One of the things which causes me concern with this is that usually when you are modifying the person's cells (in this case T-cells) it is REALLY expensive because it is person specific, not the drugs that pharmaceutical companies can mass produce and give to the masses.....yet, I think that this is probably the best route to go for cancer treatment.

What scares me? Well, I'm worried that perhaps it will be the case of those who can afford it will get it and the rest of us will die.  I'm also a little concerned at how long it will take for this to be approved in the U.S.

Why? The U.S. is often very slow to approve things.  Take, for instance, my dental implants.  They were developed in Sweden by Branmark...my dentist who did it told me that they had been doing it for 30 years when I had mine done almost 20 years ago.  However, the insurance companies and the other "boards" in the U.S. said that they were "experimental."  Therefore, when I needed something to replace the partial plate I had been given when I was 17, the insurance paid a whopping $400, and this was on a $16,000 bill.

I also shiver when I think of what someone I knew in Connecticut went through.  She was dying from breast cancer, and there was a trial which looked like it might be promising for her.  Usually, such trials are done by lottery to be fair...however we were all aghast when someone who was fairly high in a Breast Cancer Foundation locally told her that SHE could get the friend into the trial, IF she would agree to work on the fundraiser in a specific way.

Sounded fishy at the time.....and it does make me wonder.

I am interested in this platform.  Hopefully it will work on many cancers.  I am hurt when I think of my friend Stephanie who is suffering from Pancreatic Cancer.  Nothing new has come down the pike for pancreatic cancer in many years.  Breast cancer has a lot of money and awareness going for it....some of the other cancers are less "sexy" and so they get less attention and less work done on them.  Some cancers are rare enough that pharmaceutical companies aren't interested in investing the money and time to develop drugs to treat them as they won't be profitable enough.

I don't think that one disease is any more important than any other....however, I will admit I'd really like them to get some drugs to help me ASAP on the shelf and in my blood stream.

Until then, I'll look on the horizons and just wonder at the beautiful skys that one can see here on the Fly-over state of Ohio.

Trial Treatments

Life has been full of weirdness lately.  Part of the weirdness is my trying to decide if I wanted to apply for a spot in a trial cancer treatment.  I admit, that when my oncologist told me that my tumor markers had doubled at the beginning of the month, I was put into a tailspin.  He has put me on Tamoxifen because sometimes, when you've been on aromatase inhibitors  (like aromasin and arimidex) which have failed, you can fool the cancer into accepting Tamoxifen again and then it dies off.  The process, however, takes two months to see if it works or not and it may cause cancer flare ups initially.

Great...just great..  So, when I got notice of a new trial at the Roger Williams Medical Center in Providence, RI where they were looking for stage IV survivors who had "failed" on at least two rounds of chemo and hormone therapies to try using modified T-cells (harvested from the patients blood then returned to them in 2 - 3 months) to see if they could get the T-cells to go after the cancer.  Half of the group would get the modified T-cells alone and the other half would receive the T-cells with Interleukin 2.

Well, intellectually, the modified T-cells sounds wonderful and I thought that anything would be preferable to doing more chemo....Only my oncologist said that he wanted to look it over first, and that Interleukin 2 is nasty stuff and it "wasn't a walk in the park."  In addition, I would have to arrange to stay in CT and drive to RI for the treatment and tests.  I'd be gone for about a month if it went through.

Friends from Connecticut rallied and offered housing and transportation if I needed it, so I put my name in.  Only later did I notice that the initial trial only called for 12 people.  I did get an initial call to screen me and see if I was eligible.  A second telephone interview is supposed to be in the offing.

However, it did make my mouth go dry when I put my name in.  What happens in the period between starting the treatment? What if the cancer spreads quickly?  Two to three months while they are working on your T-cells seems like a long time when the cancer basically doubles every month.  What happens if after they do the treatment, it doesn't work?  How bad off would I be by that time?  Would other therapies help?  Would I be able to take them while waiting?

Scary.   I hadn't ever thought about any of these issues.   I mainly just thought that you would apply and if you got int, then you'd start immediately.....What a lot of things to consider.  Fortunately, my oncologist said that he has other things for me to try....even if the thought of going back on chemo leaves me cold.