Friday, September 30, 2011

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 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.

Sunday, September 18, 2011

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 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 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.

Friday, September 9, 2011

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 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 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. ;)

Saturday, September 3, 2011

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.