Shining some Light

When ever I hear about a cancer study which I might qualify for, I always volunteer to participate. Whatever I can do which will help us to understand what it does, shine a light on things and maybe bring it into focus,  perhaps making  life easier for others I think is important.  Sometimes, it isn't convenient.  

This week was sort of one of those times.  I got an email from one of the Noble Circle coordinators that a researcher from the University of Dayton still needed some volunteers.  Mary Fisher is studying how cancer treatments (chemo, surgery, axillary dissection) has impacted cancer survivors.  For every cancer patient of a particular age, she has matched them against another participant who does not have cancer. 

At first when I was reading the survey I thought, "Oh great...here we have another one who is looking at us as a bunch of parts rather than as a whole."  I am happy to say that she isn't.  This is looking at the whole gamut from what we report as a psychological problem (depression, fear, nervousness) to sexual issues, as well as the problems we have from neuralgia from the treatment and from lack of range of motion and other issues.  

One of the things I had to do is place a bolt through a hole in a perforated plate above my head and thread a nut on the end, working with two bolts and flip-flopping position for five minutes straight.  I learned I would never be happy in an assembly light attaching widgets. 

It took 45 minutes, and a a half-hour trip one way to the University of Dayton campus.  Timing couldn't have been worse...I am up to my eyeballs in deadlines, trying to get ready for my niece's wedding and my husband's cousin from Washington, D.C. was in town and since she was coming in on a red-eye from Seattle she needed to re-coup and re-group at my house prior to her going to an event at the University of Dayton as well.  Despite all that, I'm really glad I did it.  For one thing, I was one of only 2 left handed responders. :)  She also looked at my history and commented "Boy, you really have been through the wringer."  Which   is sometimes kind of nice to hear.  

Maybe sometime, one of these days....something I have said or information I have provided, or my cellular issues will give them the clue which will make a difference.  I can only hope.

In the meantime, a little chuckle for you.  I have had what I describe as  a "halo," longer, strands of hair which stood up from the 1/4" overall head of hair I'm growing.  These intrepid strands started go grow back quickly, and in the right light, well...I had a halo.  Since I didn't think it was very attractive for a wedding, and my eyebrows were growing back rather unkempt, I went into the hair salon to get things tidied up.  

On the way out, an older gentleman who was waiting for his wife looked at me and said  "I hope you don't mind this...I am an old Marine, and you have what we call 'high and tight with no loose ends or stragglers.'"  I laughed and had an interesting conversation with him about aircraft carriers, propellers and torque.  :)  Loved it.

Survivor Guilt

This summer has brought the loss of three women from the Noble Circle group I belong to.  The Noble Circle is designed for women to survive and thrive even though they have cancer and begins with a rather intensive weekend retreat followed by 10 weeks of weekly meetings usually lasting around 3 1/2 hours each.

Needless to say, you get to know the "sisters" pretty well.  Shortly after we started, we lost Penny who had an unknown primary.  Then Robyn who was my chemo partner lost her battle.   The next to go in August was Katie.  Penny was 35 and had a 16 year old son,  Robyn was 53, and Katie was 34 and had three children under the age of 14.

Sometimes you begin to wonder, why am I still alive?  Certainly these wonderful women had just as much to liv for if not more than I...If you're not careful, you slide into survivor guilt.

Some of us make it,some of us don't.   It doesn't mean that one person had more to live for than another, or that one person was more wicked than the other....it just is.  We know so little about what causes cancer, what cures cancer, and about survivorship in general. 

My neighbor mused on this when I returned from the last visitation.  "Why did you survive and they didn't?"  I answered, why did my father survive not one heart attack, but three...at ages 50, 72, and 78 and is now 89 years old?  She looked at me and blinked and said "My father died of a heart attack at 48."

I don't know.  I do know that I'm here, at least for now, and I'll do what I can.  Others who are closer to Penny's son and Katie's kids will be there for them.  All I can do is to say a little prayer when I think of them to help them...

If you find yourself having survivor guilt,  look at it.  If you need to, get counseling to help you.  It is normal and to be understood. We have, after all, gone through a tough battle.  We are warriors.

The Adventures of Peglegged Petunia, the Pirate Queen

I can't remember if I have told you that my eyesight seems to be pretty much back to normal....in fact it has been back to normal for a couple of weeks now.  I am finding that if I look at something and it is blurry now, it is more likely that I didn't find the "sweet spot" on my progressive bifocals.  Yuck.  I can't even believe I just admitted to having progressive bifocals.

I am still walking with a strange gait.  I have noticed that I have been moving more like my father, but his problem was due to arthritis and a knee problem.  One of my friends described it as a rolling gait...which is pretty much how I'd been thinking of it. 

The other day, my physical therapist who has been working on my hand for lymphedema commented that I was "gimping around."  She was thinking I was in pain, I told her that I was pretty sure that the problem was that the cancer in the acetabulum (pelvis) had caused deterioration and that my right hip was now shorter than my left.  She measured it.  Sure enough, it was 1/2" shorter than my left.  She suggested putting in heel lifts and I purchased something right away, which made a significant difference.

I am still having trouble with severe neuropathy in my feet and lower legs.  I don't know how much feeling will return and I'm wondering if some of it may also be a neural response causing sort of a dropped foot response...all of which are side effects of Abraxane.  Time will tell.


I did discover that I do have a side effect now from Aromasin...it causes me to have insomnia...I can't fall asleep until usually about 3:00 and I wake up at 8:30...not exactly the healthiest of situations....But I'll figure out some way to get around this....

So...until then, if you see a sleepy eyed person, who is listing down the street at 3 am wearing a bandana on her head and an eye-patch for effect, don't worry.  It's just Peglegged Petunia, the pirate queen.  Give me a lemonade and I won't make you walk the plank. ;)

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.