Cure: Cancer Resource Guide

I admit it. I often take the cancer support magazines I see at the oncologists office and once I get them home, I'm really disappointed.  They are often full of fluff or stuff which seems pretty obvious to me...but then to be fair, I have more experience going through this tunnel than most people do.

I was very surprised, however, by a freebie, "Cure:  Cancer Resource Guide 2011 edition."  The subtitles read "combining science & humanity Cancer updates, Reserach & education."  It was really worth it.  It is provided free to cancer patients and survivors, but I think I would even pay the $4.95 purchase price.  Here's the line up from the table of contents:

Part 1: About Cancer: 
          What is Cancer? 
          Pathology and Staging
          Cancer therapies
Part 2: At Diagnosis
          Medical decisions
          Dealing with Emotions
          Special Issues by Age
Part 3:  Before Treatment
           Seeking a second opinion
           Understanding Clinical Trials
            Insurance Issues
Part 4:  During Treatment
            Side Effects of Therapy
            Nutrition Facts
            Financial Matters
Part 5 Survivorship
          Finding the New Normal
           Exercise & Recovery
          Long Term & Late Effects
         Genetic Risk

Part 6:  For the Caregivers
          A New Role
          Taking Care of Yourself.







I felt that the information was well balanced and not just fluff.  While in some cases I wish it had gone into a topic a little more deeply, I don't think it could have easily and handled the other topics.  They have a website with information and you can sign up for a free subscription if you are a cancer survivor, are a caregiver, or are a patient.  You can sign up on the website.  Check it out.  I think you'll be happy you did.

Can

The other day, on my Facebook profile I posted that I wanted to eat potato chips and that wasn't good.  A friend of mine, who is also a breast cancer survivor took me to task saying after all I had been through I should eat the potato chips.  Not.

It's really easy to fall into a self-indulgent stance where we cave to our slightest whims.  I would like to propose that when we are able, that is to say not in chemotherapy because quite frankly when you're getting chemo that's just about all you can handle, we should be self-indulgent in another way.  I believe that we need to do all we can to be the healthiest we can.  It isn't easy.  I know that.  However, I do think we should think about what we are putting in our bodies and how we are treating ourselves.  What goes in our mouths should be as healthy for us as possible and everything needs to be done in moderation.

In addition, we need to make sure that we get enough sleep and enough exercise to keep our wonderful machinery running as smoothly as possible.  The human body is an amazing thing with incredible ability to recover.  However, we need to give ourselves the best possible chance.  I think that a large part of Lance Armstrong's ability to recover from what seemed to be insurmountable odds was the fact that he was very healthy and had a body which was in pretty much prime condition.  I also think that if I had been in better physical shape, that is if I had been getting the activity that I had been prior to 2009, I would have been in a lot better shape as I went through chemotherapy.  I recognize that age probably didn't do me any favors (I mean after all, doing chemo at age 50 is a lot different than going through it at age 38).

I have read lots of studies which indicate that exercising and keeping one at or slightly below the recommended weight for your height helps in keeping cancer away.  Even if it is not the silver bullet, I can guarantee that your general feeling of well-being would be much better on a day to day basis.

I know...I can hear your groans all the way here.  I am not saying it is going to be easy and remember, I am undertaking this regime as well.  I would encourage you to try to change one element and when you conquer that one, then take on something else.  It may be as simple as going to bed a little earlier so you get a full 8 to 9 hours sleep or it may be giving up that teaspoon of sugar in your favorite hot beverage.  Every little bit is a step in the right direction.

If you feel overwhelmed, then cut it down into something which you can do.  And, if you're in the middle of chemo then don't really try unless it is doing something which will help you...like taking a nap or going to bed earlier.  We need to take care of ourselves and be self-indulgent in a positive way...and do it bit by bit.  Remember, just like this stone, you CAN do this.  After all....CAN is carved in stone. :)  So indulge yourself in a positive way...whether it is taking  a 5 minute walk, reading a book for 20 minutes, or just sitting and breathing without thinking of anything. 

An Odd Thing about Disolvable Stitches

Spellbinder daylily with white and purple coneflowers.  At right, rose hips from Rosa Pomifera

Two weeks ago, I once again had a surprise as I was getting ready for bed.  When I took off my bra, I noticed a red raised area and a blister about 1/4" in diameter on my mastectomy site.  I tentatively touched the blister which promptly popped. No blood, just histamine like you'd find on a burn blister.  Since I was having pain in my pelvis in a new spot, I quickly made an appointment with my oncologist.

The verdict? It was a disolvable stitch that my body had recognized as foreign and had walled off.  Whether it was from my mastectomy which was done in January, 1998; or my lumpectomy done May 1994, we don't know. My doc says it worked to the surface and he could see the little black threads. 

No problem...once it popped it drained and went away. I still have the little scab and the threads at the top of the skin...It seems that my body recognizes foreign materials and does what it is supposed to do.  Too bad its track record with recognizing cancer cells and destroying them isn't so good. 

Can you believe it? After all these years...will wonders never cease.

Coming Back Slowly

It has now been a month and a half (roughly) since my last chemo treatment.  My eyesight is coming back.  While I can now read the printed page without a lot of difficulty, my distance vision is still blurry.  That's OK, because it is on the mend.

I am greatly annoyed, however, that my energy level is still compromised.  While I can do more than I did when I was on chemo, I am still tired out from doing a couple of things in the same day or calling upon my strength. I can't go at my garden like I used to and therefore yu see that milkweed, wild oats, Russian thistle, nut sedge, and other weeds have taken hold.  It is only by the grace of God that I am getting any tomatoes off my plants as they are overshadowed by 6 foot tall stands of ragweed and lambsquarters.  I need qa flame thrower to try to get the vegetable garden under control.

My hands and feet are still very very numb.  My sense of taste is back. My hair is now a fuzzy mostly white with some brown layer on my head...the sad thing is that it doesn't seem to be coming back on my normal hairline and is probably caused by the lack of estrogen.

I'm coming back slowly.  I just need to remember that this did not happen in a month's time and therefore, you (if you're on chemo) and I won't be instanteiously back to our pre-chemo states without time and effort to restore our strength and conditioning.

NY Times Article on what to say/do and a question

Mona Loa Daylily from my garden

I love this daylily...it is sooo in your face and gorgeous...and with a close-up you can't see the weeds in my garden. :)

Recently, a friend from the Noble Circle project forwarded this link to a New York Times article written by Bruce Feiler, entitled "You Look Great and Other Lies."     

Feiler is a cancer survivor and I have to agree with a lot of what he says, but I take exception to a couple.  He gives information to non-cancer survivors on what to say and what not to say.  Heading up his "not to say" list is "What can I do to help?"  His objection is that it puts the burden back on the patient and that it is better just to do what needs to be done as you see it.  I agree to an extent...but I also find it interesting that often when someone says "What can I do to help" and you tell them (take out the garbage, weed my garden, whatever) sometimes they don't WANT to do that.  They have their own idea of what needs to be done (which may not be what the cancer patient really WANTS at that moment) or they may be feeling like "well, why can't their (fill in the blank with the most convenient relative..spouse, etc) do this for you?". 

So.  with my comment, I don't mind someone asking this question, but if you ask it, be prepared to do what the patient asks without question, comment or hesitation.


His second "no-no" is not to say "My thoughts and prayers are with you."  Here's what he says:  "In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. But the majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”'    Hmmmm....a while back...I think when I was diagnosed with stage IV cancer in 1998,. they had just done a study where some cancer patients were openly prayed for with their knowledge, and some were prayed for without their knowledge and some weren't prayed for at all....and guess what...both of the prayer groups had higher recovery rates than the non-prayed for.  I can't remember who did the study and I'm not thinking of the appropriate search terms...(but my oh my there's a lot on the web about cancer and prayer).  I know that Feiler is saying that don't say it because it is just a comment and that most people don't ever think about it again.....but I do know that some do. 

Quite frankly, I don't think I would have done as well as I did in 1998 WITHOUT the many people who really were praying for me...which included a lot of people who had read about me in newspapers, seen me on TV, heard about me through other friends....and it was sort of cool to know that there was a whole bunch of doctors on a Mercy ship praying for me along with several Catholic churches, a synagog, and a whole bunch of protestant churches of all stripes. So...I disagree with Mr. Fieler on this one.

I'm not so sure about the "you look great."  Sometimes that's nice to hear...we know how we look.  We know that the lastpart of this line is "for someone who has cancer..is on chemo or whatever."  I do know that this spring when my husband's cousin said that my black and white fingernails weren't so bad...I KNEW she was lying and I knew that she would have a bird if her fingers looked like mine...in fact, her husband called her on it which make me laugh....but I also know that she's trying to stay positive because as another breast cancer survivor, it scares the dickens out of her to watch me go through this one more time (and I admit, it scares me too!).

However, every single thing that he lists for what you should say or do is absolutely spot on.  Of course, I'd also like a casserole every once in a while and if anyone would grab the vacuum cleaner, you certainly wouldn't have me fighting to take it out of your hand.

Now, here's my question for you...I was trying to keep my posts coming every week....Sometimes when I was on chemo, it was just really hard, especially as I try to keep my other blog going.  Now that I'm (knock on wood) finished with Chemo it is easier to write...so how often do you think? I don't think I can do every day...but what's a good amount without you being bored?  What do you want to know about? What do you think?

Here's to a clean report...I'm going early to my oncologists as I have had some trouble...and yes, my fear factor is right up there....

Life in the Danger Zone

red Stargazer lillies from my garden.  You need smellovision for these!

I have entered what I call the "danger zone."   Often, after completing treatment, cancer patients have a tendency to fall into depression.  They are no longer actively fighting cancer and they feel vulnerable.  I have been through this myself several times (obviously after completing treatment in 1994 and 1998).   I have watched others go through this in addition.  I have seen men and women all of a sudden showing all the signs of a mid-life crisis even though they may be long past "midlife".  Those who are in midlife, often have an even deeper crisis.

I have known several men who were ordinarily solid, stable people suddenly have affairs, buy motorcycles and ride as if the devil himself were behind them.  I guess in a way, the devil IS behind them.

Right now, I am watching for these things in my own life...and doing what I can to guard against it.  I know that if I start seeing symptoms of depression, I will have to do something about it.  Presently, I don't.  I am, however, fighting the thought that it has come back, that the one point rise in my tumor markers is significant (probably not) thinking that the mild discomfort I get periodically in my right side is breast cancer that has metastasized to the liver, and when I sneeze hard enough to blow my head off and it makes my ribs hurt briefly, then it is OBVIOUSLY bone mets in my ribs.  Balderdash.  I have to put on my logical cap and remind myself that this is probably not so, and even it it were, I can't do anything at present about that anyway. 

Meanwhile, my feet and ankles are still swollen (A LOT), my vision is still blurry, my hands and feet are terribly numb...and I still have fuzz on my head.  Of course, I also have spruce pitch on my head from where the weeping spruce which over hangs my goldfish pond brushed me on my head as I messed with the filter.  Blech.  Maybe I should stick some thread on it and call it hair. :)

Two thoughts for the week

El Ritmo Flamenco, art quilt by Lisa Broberg Quintana

Ok...here's thought number one:  Remember that chemo often makes you very susceptible to sunburn, even a while after you've quit AND that there are spots on your body normally covered by hair that are now exposed and very likely to be toasted...yes, I was only out for a brief amount of time, about 30 minutes at about 11:00 am in our unshaded back yard...and the back of my head which was covered by a baseball cap now has a funny oval light burn mark on it.

The second thought is more fun:  "Life may not be the party we hoped for, but while we're here we should dance."