Dangling?

One of my friends made a comment to me the other day.  She's also on Halaven (eribulen) but she's doing much better than I am....fewer side effects and MUCH better response with the tumor markers.  She said something to the effect that when she starts feeling neuropathy with a drug, she gets off it.

My viewpoint has always been that I will suffer through the neuropathy because it is better than being dead.  I suppose I came to this point as I got some neuropathy with Taxol.  I got more with Abraxane, even Xeloda gave me some, and Halaven is giving me a lot.....even to the point that I have numbness in my face.  Don't get me wrong, there's a lot of other reasons I may be experiencing this in my lower lip, and teeth....and I am checking with my dentist tomorrow.... It is a listed side effect....but I could also have a tooth infection, problems with my temporal mandibular joint (TMJ), heart issues, or a host of other things.

So....maybe she's right to jump ship and I'm silly for slogging on....,I sure as heck would like to find something that works.  My markers have been playing hopscotch.  Not fun.

So, what would  your choice be? Stick it out, or stop when you get the whimper of a debilitating side effect?  All I know is that it is getting progressively harder to walk.....  I sure do wish I could convince my oncologist to do a biopsy of the gluteal mets and have rational theraputics or Caris test it out...I am getting a little tired of being the lab rat and risking the side effects when there is something else out there which may give us the direction to go without needless side effects....but this is a new process and lots of the docs aren't looking at the new methods that these two employ, just at what used to be done.  I'm not saying it is without error, but surely it would be less expensive and possibly easier on me.

How Many,how much?

One of the things I struggle with in my current chem is not knowing when it is going to end.   Back in 1994, when I got CAF (cytoxin, adriamysin and 5-Fu) I knew I was to have 6 courses.  In 1998, with Taxol, I knew I was slated for 9 24-hour doses, one every three weeks.  But now?  "Until it no longer works or you die."

It is interesting....when people ask, and I tell them.....they startle.  They weren't expecting that.  To be honest, neither was I.  I used to play mind games with the chemos in 1994 and 1998..."One down, 5 to go..." until I had counted them out.  There are no mind games to help me through this one...Hopefully, (but terribly unlikely given how this has progressed and that it is in so many bones, my lungs and liver....and however improbably, my gluteal muscles) I will be able to knock this into a little period of remission...but....maybe not....and maybe I will be kept on a maintenance dose of some chemo ....Even for this warrior, such a protocol is hard to take.  So...I put one numb foot in front of the other and hope...That's all we can do.

There's a Cream for that!

When I was a kid and had to go to the pediatrician's to get a shot....my mom always promised me an ice cream afterwards to make me feel better (OK....it was really sherbet as I had to watch my milk intake as I had a sensitivity to dairy products).  I didn't like needles then unless they were pulling thread.

So, when I had a deep port which was often difficult to access, the nurses offered me a numbing cream for the skin.  I thought that was pretty silly as the skin was just a temporary prick and it didn't hurt much. What did hurt is when they dug around trying to find the port, poking through muscle tissue.  There's no cream for that unfortunately.

Since then, particularly after I got my current port which sits right under my skin and looks like an alien has taken up residence, I snorted when people asked me if I needed "the cream."

Today, however, I changed my mind about what I thought about it.  I was talking with another breast cancer patient who watched me get accessed.  She asked me why I didn't use THE CREAM.  I said I never really understood it.  She told me it made her life so much easier...and less painful.....and more relaxed to "get her pokes."

Hmmmm. I had known  that I could tolerate pain very well...but I never thought about it, especially in the case of needle pricks.  I said that I guess I really do have a pretty high tolerance, and said I delivered my baby without any kind of anesthesia. I thought my chemo partner for the day was going to pass out right there.

So..if you didn't know, and that pin prick hurts, just ask for the analgesic cream (it is sort of like Novocaine in a tube).  But also remind them to wait a little bit for the alcohol swabs to dry on the skin surface.  It does hurt when the needle carries in the alcohol and burns.

So...remember you can ask for THE CREAM.....and the kind of cream above isn't bad either.  I will still skip the former and occasionally have the later. Anyone want to share with their own spoon?

Karma and Punishment

About a month ago, I was sitting in my office trying to sort out insurance issues, deal with the denial of coverage for my husband and my daughter (for acne for pete's sake)  and dealing with some things which would be minor under most circumstances, but with the lack of income in my household....it has become major. I began to wonder what in heaven's name did I do  to deserve this?  I then was reading one of the posts from an older, devout Christian lady on one of the metastatic breast cancer boards I read and she said that she believed God was punishing her.

I am sure that this lady hasn't killed anyone,.  In fact, I am pretty sure that her transgressions are minor.....and my head snapped to.  If God is an entity who mets out punishment like this, then I want no part of him...and I certainly DO NOT believe in Karma, particularly the thought that the actions of an ancestor several generations ago can plague us now.  No.  This is just the human side of us wanted to explain the unexplainable....why we are suffering.

But it isn't just us....baby's suffer horrendous diseases....innocent children do as well.  Unfortunately, suffering side-swipes us...and it is up to us to make the best of it.   Sometimes I admit to myself of being a little jealous of those who are planning trips, and retirement.....and  I can't.  But, I will continue to forge ahead, and enjoy what I can.  I hope you will too.


I know this isn't a chameleon, but my photographs of anoles I took several years ago in Florida, are now corrupted and I borrowed this photograph of "Carlos" from Lauretta Brandow Kyser. 

Sherrie loves color!: Cancer survivor's mom needs votes

One of my on line Quilty friends is Sherrie Spangler.   She and I have very similar tastes in color. :)  today she posted about a mom of a 2 year old cancer survivor's mom who has an etsy site wehre she sells her hand-made knitted and crocheted items.  For every three hats sold, she donates one to a child currently fighting cancer.  Her etsy site is:  www.violetbrielle.etsy.com

She is participating in a website: Geen Mom Guide and they are having a contest.  Please check out Sherrie's blog spot and follow her links to give this woman extra publicity.

Sherrie loves color!: Cancer survivor's mom needs votes

Impossible?

I was pleased to find this today.  I guess it was originally posted here:  http://piccsy.com/2012/05/possible-s8lor5d66

I don't know where people find this stuff.....

Today was another treatment day and I was talking to a guy who has an aggressive form of lymphoma.  He is hopeful for a bone marrow transplant, but he must get the lymphoma stabilized before he goes for it.

He and I were of the same viewpoint:  We would continue, hoping and waiting for something to work so that we could manage this as a chronic disease.  "I don't fool myself," he said.  "Even if I do get a bone marrow transplant, life will be different.  I may have to do things in a different way....but if I can get a few more years or 10 or 20....I'll do what I can."

Things are different.  For the most part I feel good, even though I have lots of annoying side effects....and there's always that monkey on my shoulder....but if I keep on feeding it bananas, maybe I can keep it from whacking me in the head.

Sometimes Breaks are Good

A little more than a month ago, I was struggling with extreme neuropathy, lack of breath, and muscle weakness brought on by the Halaven treatments I was getting.  The neuropathy, as I have mentioned before, doesn't give me pain, but it makes me unbalanced in my walking and makes it hard to control my feet.  I was getting beaten down.

Soo.....I asked my oncologist if I could have a little break, thinking a couple of weeks off would make it so I could bear it.  He gave me a month off.

Asking for a break is a scary thing for a patient to do.  We are besieged by fears that the cancer will go completely out of control in the month we have off.  To me, and I am sure many other chemotherapy patients, we imagine that the cancer is sitting in our bodies rubbing its little receptors and growth proteins together just waiting until we are not vigilant, and the armor of chemo is let down.  Not being on chemo or not doing anything to our minds makes us as vulnerable as a new born baby.

I was assured by people from drug companies as well as my oncologist that this wasn't the case.  Even so, I was slightly worried.  The month off was wonderful....and well timed as the day after I saw my oncologist, I developed the gastro bug which was with me for three weeks. If I had been on chemo I think it would have really wiped me out.

Some of my side effects (most notably the shortness of breath, the slight nausea, loss of taste, watery/tearing eyes and a number of other lesser ones) got better or went away completely.  Although the neuropathy was with me, my feet were no longer "dropping."   Mentally, I recovered and by the time I was to re-start, I could face it much better.  I was ready and willing to go back into the battle.

Just as everyone told me, chemotherapy has residual effects, and even though I didn't get treatment for four weeks, my tumor markers continued to drop, not as dramatically as they do when I get treatments, but it was still in the right direction.  Mentally, as I said, I am much better, and I know that when it gets to the point when I am having too much trouble, I can ask for another little break.  That does wonders for my psyche.

So, dear comrades in arms, please do not hesitate to ask when you get to the point when you don't think you can take it any longer.  A vacation, especially from chemo, can do you a lot of good and put you in better fighting form when you go back to it.  Discuss it with your oncologist.   Go as far as you can, but keep in mind that you CAN do as I did....with your doctor's help.