A Useful Website: Integrative Cancer Care

Several weeks ago, Rachelldon on the Inspire website posted her website which cited something called Integrative Cancer Care.  I am really grateful as I got LOTS out of it.  Not the least of which, there's some really cool headed discussion on using vitamins and supplements while you're on chemo, and much to my happiness, the best article on peripheral neuropathy I've read.

It was such a relief to me to find out that the fact that I often tripped over stuff was a direct result of the neuropathy.  I know this sounds odd, but I couldn't figure out why I tripped over the rolling stool in the library aisle.  I saw it. I knew it was there, and it was like it jumped in front of my foot...I had no idea my foot was anywhere near the stool....and this is a result of the neuropathy, not that I had suddenly become the biggest klutz in the world.

So, check this out....and look ALL around it.  It is one way cool site.  Rachell's website is called luponcancer.com (numeral 1, not an "L").  It's also great because it discusses a number of different types of cancer, and  things just in general.  It has sections for blood cancers, childhood cancers, breast, ovarian, colorectal, lung and prostate cancers as well as melanoma.  There's fun stuff....free stuff for cancer patients....and just good hard information.  I hope you enjoy it!

Complimentary Therapies

I went outside to work in the garden a little bit today...trying to take it easy as I have a habit of over doing it...and I found my early dutch iris blooming.  This is a shot I took of it a couple of years ago, but what a present!

Yesterday, I went to Dayton to get a Polarity/Reiki session with Lisa Nelson.  Lisa, and a couple other practitioners, provide sessions free or at reduced rates to members of the Noble Sister, the women's cancer support group I joined last year.

While there isn't a lot of studies to indicate whether or not Reiki (sometimes referred to as "healing touch") really "heals" someone with cancer, it certainly does work for stress reduction and relaxation....and it feels really good.  I was fortunate to get Reiki done for me several times from friends in Connecticut and was grateful to find places here where I could get it as well.  Lisa combines Reiki and polarity therapy and so far, I've been three times, I've really felt it was wonderful.  It certainly isn't harming and I believe it is doing me a lot of good.

Sometimes, though, I'm a little saddened to know that there are lots of people who could benefit from this but they are not in areas which have practitioners or they can't afford it.

If you do have an opportunity to give it a try, I really suggest that you do so.

Fearing Chemotherapy

  Not too long ago, a metastatic breast cancer survivor posted on the Advanced Breast Cancer Support Community  that she was going to refuse chemo because "it only worked for a couple of years and if you're stage IV you're going to die from it anyway."  well...those weren't quite her words, but that was the gist of it....Her fear was coming out.

Obviously, I disagree with that statement as I managed to go for 14 years with no evidence of disease (affectionately called "NED." ) before getting back in to the trenches.  I have to admit, although I wouldn't CHOOSE to have chemo...that is, if I were disease free, I wouldn't go to my doctor and say "Hey, I think I'd like to try chemotherapy today.....my life would just not be complete without it!"  it is doable.  Not fun, but do-able.  I admit, I was pretty worn out with the Abraxane...and my hands and feet are still very very numb, a maddening fact that it only worked while I was on it...but it didn't have any lasting effects....the thought of going back on chemo within two months of stopping Abraxane was more than I wanted to wrap my brain around....but since I've had a little more time, I feel that I would be ready to go back on if I needed to.

I find it odd and a bit disquieting that for many people who are diagnosed with cancer, chemotherapy scares them more than cancer does.  Pretty horrific thought isn't it?  The "cure" (and I use that loosely because there really isn't a cure) viewed as being worse than the disease.

Misconceptions about chemo abound.....not everyone has the same side effects....some people find it very easy whereas others may have a tough time with the same drug.

However, sometimes it works, works well, and works for a long time.  I'm living proof of that.  Don't get me wrong...it can always come back...even if you've had a cancer which was detected early....at least for breast cancer, despite what all the happy-dappy GE advertisements, ACS and Susan G. Komen ads want you to think.  Yes...early detection can save lives and can prolong the period in which you are cancer free.....but what about us who have had it come back...and spread? 

Ooops....no surprise, I digress.  Even so, there are those people who manage to make it out for a long time....people DO survive.  Why can't it be you? Why can't it be me? I can tell you though, if you don't fight and if you don't try, your chances of making it are lessened.   

Deciding to refuse chemo-therapies, or any other therapy is a personal decision, but it is one which you need to collect a lot of information about.  It is one that you need to thoroughly discuss with your oncologist...and maybe with a second opinion as well. 

I might not like it....I might not like the side effects, but I am going to take every little chance I have until I just cannot do it anymore.  

Bits and Pieces

I've been "chatting" with CAX over on the Advanced Breast Cancer site.....CAX is living in Norway and is having difficulty getting anyone to look at her as a whole person.  She has doctors for her heart condition, she has doctors looking after her for the series of blood clots she had, and nerve damage.  She's frustrated because the doctors don't seem to talk to each other and share information.

Boy, do I know how that feels.  I find that you really have to fight for it, and sometimes you will alienate those who are supposedly looking after you.  I am particularly confused at times when something happens and I can't tell if it is a side effect or just something which has come my way....so I often opt to visit the my general practitioner rather than driving down to my oncologist who is farther away.

You really have to keep the whole person in focus in front of the doctor's eyes.  I think this is a major problem in today's medicine.  We aren't treating the person as a whole, we aren't having all the specialists working well together and the person who loses is the patient.  Annoying.

We have the same problem here as in Europe.  Go figure.

However, I did get a little charge out of visiting my GP on Friday for my back pain.  He used his reflect hammer to test the neural response on both of my knees....of course, nothing moved.  The nerves are very damaged.  I know that. I've been trying to tell people that...but when the doctor sees the extent of the damage himself....well, I get a little chuckle at seeing his eyebrows raise.

Fear and Loathing

On the Inspire site, a site for "advanced breast cancer" patient (survivor? Metavivor???) support a number of posts or discussions have been up lately about sex and husbands...well, one was about a husband of a late stage cancer patient who was wondering why other husbands were showing up on the site, and two others were about sex and the cancer patient.

It was good to see frank discussions about this....mostly about us feeling badly for our husbands that we didn't have any sexual drive, found that sex was painful, and that they were just in this position at all....having a wife who wasn't in good health.  A number of us were quite young...even though I'm not young now, I was when I started out on this journey.

One woman said  that "sex doesn't have to be penetration."  I commented that I "got" that, but because of the lack of estrogen from long term removal of my ovaries, I'm not even really interested...and I feel that I'm sort of cheating my husband.....

Her comment back a little bit later was that we were being selfish and filled with self-pity.  Bull-pucky.  That's not it at all.   I am wistful that things aren't different, and I do feel that my husband has gotten the short end of the stick.  I really feel that she doesn't understand....and she may not have the same issues...there ARE people on that site which are stage III, or haven't had their ovaries removed or whatever....

I also have been struggling with getting people to understand what a stage IV diagnosis means....and that while I have hair, it doesn't mean that I am not fighting cancer.  Trying to get them to understand that we are more inclined than the average patient to feel like "the other shoe is about to drop."   I went to the A Wear Affair, a fund raiser for Noble Circle in Dayton which included a fashion show....as they said the names and the number of years they had "thrived" with cancer....I must admit to feeling a bit jaded as people clapped for people who had had lesser diagnosis or shorter years out....and knowing that there were very few people in the room who really understood and maybe felt the same as I....fortunately, I was sitting with another MBCer.... ah well.....yes, I guess on some days I do feel a little jealous....maybe I'm just getting tired of fighting the battle.

And then there is the desire to get somewhere back on even keel. Wondering if you'll be able to do it...trying to find the "new normal."  Praying that the drugs which are working continue to work and maybe that the pain would go away.


And yah....Adinfinitum sent me a sample of organic lubricant called "Valera."  I have to admit...I'm afraid to use it.....gotta get up the courage....years of pain makes it a little difficult to even think about.....

Poison?

I have been reading lots of posts on the Metatastic Breast Cancer site (Inspire) where they refer to Adriamycin as "the red devil" and other chemos as poison.

I have to admit, it makes me cringe.  I guess because I felt that by calling the drugs by nasty monikers, it somehow made it worse....maybe it sets your mind up to create more difficult side effects.

Yes, they are tough.   But I always looked at it that they had to be tough to kill the cancer cells, I was just determined to be tougher.

Chemo and cancer are scary enough....we don't have to make them scarier.  But that's just me...

It's kind of like this....Foxglove..a gorgeous plant, the source for the chemical digitalis which is very beneficial to many heart patients.....but digitalis, is also poison....yet, I don't think that many heart patients refer to it as poison....of course, many do refer to warfarin (coumadin) as rat poison...but then that's what it is. ;)

Lymphedivas Compression Sleeves and Gauntlets

Last spring, much to my surprise, I developed lymphedema in my hand 17 years after having the axillary dissection to remove lymph nodes to test to see if the cancer had spread.  I only had 13 removed and the surgeon said then that lymphedema was less common than it once was.

Lymphedema is the swelling of a body part (usually arms and legs but I've heard of others who have had damage to their lymphatic systems elsewhere have developed it).  In Western countries, the most common people to get it are those who have had axillary dissection and/or radiation.  The lymphatic fluids aren't carried away because the pathways have been disrupted.  They collect and cause swelling, often resulting in pain, and can result in thickening of the skin and other problems.

I didn't give it much thought, but was careful to not allow blood pressure to be taken on that arm since that can cause lymphedema.  This spring, I was appalled to notice that my hand had swollen.  I was on chemotherapy and developed an infection in my fingernails and that brought on the lymphedema.

It wasn't terribly serious, but I was worried and went to one therapist who fitted me with the above glove.  She told me that if the fingers on it bothered me, just to cut them off.

Not exactly thrilling to look at, is it?  In fact, I looked like a moldy Michael Jackson.  I also felt like it didn't do much.  Granted, it seemed like the swelling was pretty much limited to my hand.  After one visit, and the glove I went on my way.

It seemed like it was getting worse, and I decided to to to a different therapist.  That therapist gave me a lot more exercises and explained that sometimes the lack of range of motion and tightness of the muscles increases lymphedema.  She also told me about Lymphedivas compression sleeves and gloves, which are called gauntlets (yah, as in throw down the... :) ).

As I mentioned in my original post, Rachel Levin Troxell, and Robin Miller, breast cancer patients who suffered from lymphedema started Lymphedivas because they wanted a more stylish alternative to the compression sleeves and gloves out there.  Robin left the company in 2007, and Rachel continued.

One of my high school friends commented that people saw her lymphedema sleeve and thought she was a burn victim.  It's bad enough all the indignities that cancer survivors have, we don't need another ugly garment as well.

Lymphedema sleeves and gloves aren't cheap..In fact, when I originally posted, I commented that I would have to wait or that maybe Santa would be nice.

Well...that comment got the ball rolling. Long time biking buddy Jean Zaniewski who married our best man contacted Lymphedivas about getting a gift certificate to give me for Christmas....they didn't have any.  When she told them about me and about the blog, Josh Levin, Rachel's little brother and president of the company emailed me and said that he'd provide a set so I could review them here.

One of the things which I thought was cool first was the fact that you could get them in skin tones which would more readily match your own skin tone.  I just couldn't imagine a darker skinned person being happy with a sleeve or glove the color of my first one.  Josh said that that was the point, but that they are stamped with the color, rather than being dyed in the yarn or cloth so there is an issue with some un-evenness when it stretches or on seams.

I must admit, I wasn't interested in the skin tones...I wanted FUN.  I mean really, if we have to wear these things, let them be fun AND comfortable.  Here one of their models is wearing a leopard print.  Take a look on the website and see all their patterned pieces.

They also have them in solid colors (hot pink, black and white) and you can have a dazzly diamond pattern on them as well..I'm not much for razzle dazzle...


But I do have an unconventional streak and the blue lotus tatoo is what I have chosen.  I'm a visual person, and most of the comments I've gotten from people have to do with the fact that they think I have a tatoo!  One lady looked at the back of my hand and said "Oh, that must have hurt....wait, it's NOT a tatoo!"
   I admit, it made me giggle.  Here's the gauntlet after I wore it about the same amount of time as the ugly one above.  Both were washed the same amount of time so you can draw conclusions as to the wear-ability of one, over the other.

The Lymphediva's version was very comfortable and I felt it was DOING something.  Since I got these in winter, I can't speak to how cool they are, but they are made from fabric from the trademark owners of Lycra and Coolmax, both of which are old friends of mine from my bicycling days and I can attest that this is better than the stuff the other thing was made from.

There is some pilling on the hand of the Lymphediva product, but it isn't as bad as the one on the other and you have to understand I use my hands A LOT.  I wear it when I'm cleaning house, sewing (I'm a quilter, so you want to talk about pins???), brushing the cat, blah blah blah.  No holds barred here. I don't think any fiber can make it through my work out unless it was Kevlar, and that wouldn't make a very good lymphedema glove.

Their fabric is made of a 360 degree stretch knit which prevents binding, and certainly I haven't experienced any of that.  Aloe vera fabric finishing has been added (unscented) to help moisturize.  I don't know how effective this is over time, I wonder if it would eventually wear/wash out....but I really can't fault the comfort of these!

Rachel developed these items because she felt that they wouldn't do any good if they sat in a drawer and if we didn't like them we wouldn't wear them.  I can attest to that.  Did I mention how comfortable they are????

Lymphedivas compression sleeves and gauntlets are made in the U.S.A of  American fabrics, shipped by an American company but are happy to ship world wide for those of you are are interested in such things.  They are the little guys....Jobst and others making this type of thing are not U.S. companies and are HUGE.

I have to say I wear these much more than my other THING and it is much more comfortable.  You can get them online from Lymphedivas, but they also have links to retail stores and online sales elsewhere.  Right now they are sold in about 250 retail places around the world.  Their website has a lot of information and information on sizing, although I'll tell you you HAVE to have someone measure you.  You can't do it yourself and I'd go so far as to say that if you have a Lymphedema therapist, they would be a good person to have measure you for one.

They come in 2 compression measurements and you'll need to know which you need....again, a therapist question.

Yes, they are expensive, and I don't know about how insurance would play into it.....However, if you sign on to the Lymphediva website, they do have specials from time to time.  Right now they are having a Cupid's Sale   several of their pink toned gloves/sleeves are on sale and a limited edition crystal heart is available on the solid and natural colors for an additional $15 from now until they run out or Feb. 14th.  Also, buying the combinations of gauntlet and sleeve together will save you some. Lastly, they do sell seconds, and they have a clearance section which can also save you some cash.

And yes....I would buy them again  and I will.

You owe it to yourself to go to the Lymphediva website and read about Rachel, and go through all the information there is there.  Its fascinating, although Rachel's blog is heart breaking as well.  I would have loved to have met her.  Unfortunately, Rachel died from a recurrence  January, 2008 at age 37. Her parents and brother have continued the company.   I'm really glad she created this company.  I'm grateful to Josh for the time he has spent talking to me about the products and for giving me the opportunity to share what I think about them with you.

Oh yeah...and as a disclaimer:  Lymphediva's supplied me with the gauntlet, sleeve and informational materials.  I have not been compensated for this review, nor do I have any connection with the company other than I'm very happy with their product and think its really cool!