Cancer Support Groups

It is often difficult for the advanced or metastatic cancer patient to find a local support group.  Many support groups cater to those who were recently diagnosed with an early stage cancer.  They do not understand the reality for advanced cancer patients...and many don't want to.  We are emblems of fear to them.  When I lived in Connecticut, I was lucky to be a part of The Busom Buddies which was sponsored by the Meriden-Wallingford (Connecticut)  branch of the American Cancer Society.  Although I was the only stage IV person there, this group was a bunch of sage, funny and helpful women who supported me and helped me along the way even though I was in my 30s and most of them were in their 60s or older.

I had hoped to find a similar group here....but it seems that in person support groups are harder to find...a pity I think as although you may know people who have had breast cancer, the collective experience of 10  - 20 women is far better and in the case of the Busom Buddies, we had a social worker assigned to us to facilitate and she was just great at making sure we stayed within our boundaries or had the clinical material to point us in the right direction if we had specific concerns or problems.  She was also associated with the local hospital which was a great help.

Here, in the Greater Dayton area, I joined the Noble Circle .....but lately I have been feeling alienated from that.  This was their brochure for their fundraiser the "A Wear Affair"  which was held this last weekend.  I didn't go.  Primarily, the name for this function turned me off.  I am not thriving.  I'm in the trenches and giving it all I have.  Their byline which is above no longer seems to fit.  Thriving? Hardly.  In my group of 15 women, five died within the first year.  Another member who is in the same boat as I am has said she's not going to be involved much as she has "Noble Circle Regret" because we have lost so many....and also, it often seems that even though there are members who are fighting advanced cancer with this group, we are in a minority.

Still....it is important to have some contact with others who are going through this....and there are several very good on-line communities for people who have advanced stage cancer.  I hope to be able to give you a whole list of links soon..but I will give you a couple and hope you can join in and add more.  I prefer to go to site which are monitored as there can be some really way out people and there are those who are "snake oil" salesmen who are advocating "cures" which in reality are just a profit maker for them...or those who can get very negative.

Here are some of the ones which I think are pretty darned good:

http://www.metavivor.org/Support.html

This webpage talks about the various support groups sponsored by Metavivor, as well as how to start your own and what to look for in a group.

http://www.advancedbc.org/

http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Online-Support-Groups.html

http://community.youngsurvival.org/

http://www.cancercare.org/patients_and_survivors

http://www.inspire.com/

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CLTFl4rV1LUCFUVnOgod0k8AxA


http://www.healthcentral.com/breast-cancer/?ic=1102

(Health Central's "support group" functions through their share posts.  PJ Hamel and Phyllis Johnson are the two people I have had the most contact with....and I thoroughly enjoy them.)

Even so....you will find that from time to time you will need to step back, or avoid some posts.  We have cancer.  Some of us won't make it....and that makes it hard.  You really do mourn these people when they die.  However, I always feel grateful that I got to "meet" them.

If you know me...you'll know that I am quite fond of A. A. Milne's Winnie the Pooh.  Even though it is approaching 100 years since Winnie the Pooh, bear of very little brain and more stuffing that he ought came upon the scene, Milne had wonderful insight and the book is filled with nuggets....

“How lucky I am to have something that makes saying goodbye so hard.” 
― A.A. Milne, Winnie-the-Pooh

Side Effects and Drug Information

When faced with "choosing" new drugs, sometimes the fear of side effects can be overwhelming.  In addition, once you've started a new drug, sometimes it is difficult to determine what is a side effect of the drug and what is caused by something else.

I am preparing to figure out what new chemotherapy to start...and I must admit, I hate the fact that I have to do this.  It seems sort of wrong that the common thing today is to have the oncologist give you a selection of the drugs and.....you pick your own poison.  I don't mean to be negative, but it is strange.  I understand that it IS a good thing for the patient to have input as well as to feel like they are a partner in the treatment.  However, it is scary that we, who have no idea what it is going to be like, or how to interpret the cancers we have in order to choose the best thing, have to pick one.  Sometimes I feel rather much like Alice in Wonderland when she is presented with the vials and is told to pick one.

I would like it if somehow we were able to test the drugs against our particular cancers and choose from there....and in fact, in other countries (as well as here) there are ways of doing assays to rule out drugs which are likely not to work.  However, as I have noted before, that won't work for me as I have bone mets and no way of taking a live sample at present.  In addition, I don't have the money right now as this isn't covered by insurance.

Sometimes when you read the possible side effects you are more frightened than ever before.  The list of possibilities is daunting.  Downright terrifying.  However, all of the chemo-therapies have pretty prodigious side effects.  It is easy to think that you are going to have ALL of them, or you are going to have the most serious.  Usually, the patient information only lists the most common side effects. Instead of looking at that, I usually go to the paper inserts which are in the boxes called "highlights of prescribing information." This is exhaustive and truth be told, I sit and read it at the computer as much of it is written in medical jargon.  For instance, I learned that "epistaxis" means nosebleeds.

One of the best things about the inserts is that there is usually as section which lists ALL the adverse reactions, with the percentage of people in the study which reported them and listed against those who received a placebo in the trial.  Many side effects are rarer....for instance some of the side effects I had from Xeloda were only reported in 8% of the patients who were in the trial.  That didn't mean that it made me any less happy to HAVE those side effects, but it is worthwhile to note that for most, this side effect wasn't likely to happen.

These sheets are difficult to read.....but I think they are worthwhile.  It might be useful for you to read them and highlight areas to talk with your oncologist about so that you can understand them.  If  you don't have a sheet included with your drugs, or want to find the sheet for something you are contemplating taking, search on the name of the drug and "prescribing information" ,  for instance "Xeloda Prescribing information."  check out the most likely, looking for the link.  For Xeloda, I found this:

http://www.xeloda.com/treatment/side-effects/managing

Down at the bottom of the page is a hot link in bright blue which says  "Please see complete Prescribing Information" with the "prescribing information" being in a bright blue hotlink.  If  you click on that, you are taken to a Genentech download site which will give you a PDF to read.  Take a look...and have a dictionary handy.

Intent

Isn't this piece of graffiti neat? Sometimes I have some trouble with graffiti.  On the one hand, I admire a lot of it for the artwork...on the other hand, it bothers me that people are defacing other people's property.....and of course, not all graffiti is artistic.

When I wrote the post about the Platitudes....I was trying to offer some different reasons for the responses we get from friends, family and acquaintances, as well as offer some reasons for them saying them....sort of to help both sides out.

However, twice I have been surprised by friends of mine.....I forget that they read this too.  At Christmas, one apologized for saying that she had completed two things on her bucket list...That didn't bother me at all...and it is only when I am in a mood, or the circumstances in which it was being said that it bothers me.... Last week, one of the sweetest, dearest friends I know apologized for saying that I was going to be OK....Not necessary.  I understand what they area saying.....it is only sometimes, especially with family members, that I need them to understand that where I am is a very scary place....but if they want to offer the affirmation that I am going to be OK..then that's OK.

There are other things to say....other ways of looking at it....I hope that we can explore and find the way which is best for us.

Platitudes

Platypus, borrowed from http://mudfooted.com/platypus-mammal-eggs-bill/

Today, I got an IM from another stage IV survivor.  She was having a hard day...and was tired of hearing people tell her "you'll be OK."

Another friend of mine who has advanced ovarian cancer also has commented on this...how it makes her crazy because people DON'T know that you will be OK...in all likelihood, those of us in this boat probably won't be OK.  At the very least we will suffer financial set backs, worry, and tons of drugs, hospital visits and procedures.

For many of the people who offer such platitudes, most of the time what they are really saying is what they want for you.  This is an affirmation...which is somewhat mystical thinking...the more that we say "you will be OK" then maybe that person will be OK.  Sometimes, I have run into people who do have that mystical understanding...in fact I have felt it on occasion when speaking with someone who is undergoing a health issue...I sometimes get the feeling that they will most certainly be OK....but this is entirely unscientific and without foundation...and quite frankly, I am usually afraid to speak of it.

With my cousin, when I see her, she will say "You will be OK."  For her, she is saying it to calm herself down as she had breast cancer and finished treatment I think in 2004....so for her, she is absolutely terrified. Our friends and loved ones have difficulty knowing that they could indeed lose us....and so they keep on saying "you'll be OK."

Sometimes, this isn't enough.  We as cancer patients NEED people to understand and commiserate with us, even if briefly.  Sometimes we need someone to acknowledge our mortality and grieve with us before we go on into battle.  I got mad at my husband, because he couldn't do this....it was just too scary for him.

It is a tight rope.  You want to be positive for the person....but sometimes, saying "you'll be OK" falls flat.  So...perhaps the better thing to say would be "I want you to be well.  I hope and pray that you will be OK.  And I really wish you weren't going through this.  If you shouldn't be OK, I will miss you.  I will remember you...and for now, I just love you."

Attention Manufacturer of Mammography Machines!

Tuesday I had my yearly mammogram.  I don't really mind them...except for one little thing....something which seems to me like it could be easily fixed.  It is a design flaw.

No, I'm not talking about the squishing of the breast between the platen and the plate. Is is pleasant? No, but I understand why it must be done and I can handle it.  Like most breast cancer survivors, I tell them to squish my breast as hard as they can, and usually the tech's eyes get very large when I don't even whimper at the amount of pressure they administer.

What hurts more than this...and which is annoying because I think it can be easily fixed, is that the second view is taken at an angle.  The machine is rotate and you are supposed to hang onto the handle (which I sort of drew a maroon line to on the top)....the bottom maroon line points to the edge of the platen.  See the shape?  This pokey corner gets shoved into your armpit.  Tightly.  Painfully.   And the thing which bugs me the most is that if this edge could be rounded, it would hurt a whole heck of a lot less.  It doesn't come into play with the dead-on view...but man oh man does it hurt when that corner digs into the tender spot under your arm....all the while your breast is getting squished...but this armpit thingy hurts me more than the squishing....and it hurts my brain to think that this might probably be easily solved...if only the designers had to have a mammogram done on themselves with what they design....

So wake up you makers of mammogram machines! Please develop something that is less of a torture device...especially if part of the torture comes from something which isn't an integral part of the test.

Choosing Chemo isn't like picking out a new pair of shoes

I am often dumbfounded over the change I have seen in medical practice these days...or maybe it is partly the difference I see between oncology practices here and in Connecticut.   It seems to me that here at least the patient is put in the drivers seat.....sometimes it is an uncomfortable place to be.  Here we are, relatively inexperienced, or even if we are experienced, we barely have the beginning of knowing what to do other than to apply brakes and use the turn indicators.  Maybe.

You see earlier this year I went in to the oncologists.  My liver biopsy had proven negative (there was some uptake which wasn't cancer) and my tumor markers were stable and the bone metastases didn't show any progression on the P.E.T. scan.   We reviewed where we were.  My oncologist then asked me "Do you want to stay on this or do you want to try something else?"

Huh?

I'm not a doctor.  We are not picking out a pair of shoes based on looks and maybe purpose and comfort.   Heck, I'd feel better if I had even those earmarks for choosing chemos.  But I don't.  In fact, since it is "only in my bone" we don't have anything to even test to see if it has changed HER2Neu or hormone receptor activity.  So...why in the heck am I being asked what I want to do?

Well...if I had my choice, I would ask for a huge pair of scissors like these to just snip that old cancer out and kill it with some really big guns.  But I don't have much of a choice....

So...I feel like I am Mr. Toad in the driver's seat preparing for another wild ride.

What did I say? Why should we change if I am stable and there isn't any progression?  Unless, of course, you know something I don't or you have something which will give me fewer side effects and be more effective.

But there isn't.  So I continue trudging through Xeloda.

Amusement at Form Letters

     Friday I received a form letter from the hospital which has been doing my mammograms since we moved to Troy.  I was sort of amused by it.  First, it was Dated Dec. 27, and it came in Jan. 11th's mail.  "Our records indicate that based on your screening mammogram performed on 1/116/2012, it is time to schedule a routine screening mammogram of both breasts."  Really? I wonder how they are going to find the missing one?  I am also amused by the "routine screening mammogram."  For breast cancer survivors, no mammogram is routine.    I also am somewhat annoyed by the fact that even though I have had breast cancer and am now at stage IV, the only thing that the insurance covers is "a routine screening exam."  In other words, a rather cursory look....a diagnostic mammo, they go over in more detail.

On the other hand, the letter goes on to say this:  "Be aware that many breast cancers do not produce symptoms.  Early detection requires a combination of monthly breast self-examination, yearly physical breast examinations, and periodic mammography according to your age and physician's recommendations.  Current American Cancer Society Guidelines recommend screening mammograms and clinical breast exams every year beginning at age 40."

So, some of this I like....especially the self-breast examinations.  Why? Well, because at one of the last times I took my daughter for her yearly physicals, the doctor said NOT to do self breast exams because "you often find false negatives."  Excuse my language, but WTF? I would rather have something checked out and find it was a false alarm than to have anyone go through the hell I did because I didn't know that at age 33 I was at risk of breast cancer....and my tumor was quite large and easily felt by the time I realized I wasn't imagining things.

Yes, I realize that it can cause concern.  Yes, I realize that following up can cost money.  But, I think that this hospital is to be lauded because it does point out that self-exams are still important.

I also think of my niece's experience. She is 30 and recently went in to have a breast MRI.  She had to fight for it, even though her mother was diagnosed with breast cancer at 45 and I was diagnosed at 34.  Why a breast  MRI? Because she is young, she has dense breasts and dense breasts make it difficult to see problems.  Her PCP bucked it. Her insurance bucked it....the oncologist she went to applauded her because she was doing exactly what she needed to to protect her health.

I am beginning to believe that the patient is often being left behind as the almighty dollar is what we are really protecting...or rather, the almighty insurance companies.  Remember, very few hospitals are charity hospitals anymore...most are for profit entities.  Insurance companies are not there to help us, they are there to make money.   I realize that this is very harsh and there are a lot of hard working men and women in the health provision field who do care about their patients and work hard to try to make sure that we live as long and as well as possible...but we would be ostriches to not look at the whole picture.

So...even if I can't seem  to find my left breast so that they can do a mammogram of it.....or maybe....maybe they want to try a mamm of my prosthesis...I still think that this reminder and the letter is a good thing...