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."

Rejoice in Being Bald!

Ok...so I don't have a photo of my bald head currently...and no one is around to shoot me at present...so these glowing globes will have to suffice.


Today, a fellow Noble Circle Sister groaned that she officially didn't like being bald.  I'm afraid that I have to disagree.  This is my third time being bald, and I'm afraid that I'm being just a little lazy...I don't bother wearing hats, scarves or wigs around the house anymore...and that means when I go outside to talk to my neighbor or pick up mail either.  I just don't care.

You see, I'm still me, with or without hair.  It doesn't change who I am.  It does, however, make things a little nicer in the summer.

For instance, I've never taken as quick of showers as I do now.  When I come out of the shower, I throw a towel over my head and I'm done.  No hair is ever out of place.  How can that be? Easy, I don't have any.  I've saved a fortune in hair cuts and hair dresser appointments.  The wind or rain cannot muss my hair up.  No hat head....put a hat on, and my head is just the same as when I take it off.

In the summer, wigs are hot and bald is cool.  Wearing a baseball cap is cool.  If I could remember how I used to tie my cotton gauze hanks so they looked good, I might use those....but I just don't care.

I went to a quilting meeting and someone kept on mentioning my eyes.  "I can't believe how blue they are!  I've never noticed how beautiful your eyes are.  Are they more blue?" To which another Breast Cancer surrivor noted "No, you just don't have her hair distracting you...her eyes have always been like that."  Lets hear it for my eyes.  Oh yeah, and earrings.  No one has made as many comments about my cool earrings until you can REALLY see your ears.

Does not having hair made me any less of a woman? I don't think so .  And I'm still me.  Oh yeah...and just for the record, Nefertiti, once considered one of the most beautiful women in the world was also bald....she didn't have chemo as her hair dresser, she just had her head shaved, but the result was the same.  So enjoy this carefree period while you can.  And remember, baldness is the least of your problems and your hair will return after chemo...just be prepared...it might just be curly.

A Difficult post to Write

I have been thinking about how to write this post for a while...and I have decided just to jump in.  I hope it won't be too difficult for anyone to read. As a cancer patient, you meet people in treatment who don't survive their illness.   You know that going into it.  I have received treatment with several people  in the past who didn't survive.  It is a given that that will happen.
  
With life comes death. The human condition demands it. The rub is when we as mere humans say "it is not enough." As long as we remember and pass those gems that the deceased gave us to future generations, they will live on on this side...and forever out of sight until we join them as well.

My fellow Rowdy Chemo partner has passed over to the other side. No longer in pain, no longer in fear, forever in Love. Here  you see her with her dear husband Jeff.  She worried about Jeff...that she would be leaving him, Robyn was vital and a real spitfire.  She called herself the "Breast Cancer Diva" and others called her Diva as well...I don't think she was REALLY a Diva in the negative sense...she got things done, but she really cared about others. 

Robyn loved to ballroom dance.  She loved her kitties most of which were rescues from really horrible fates.  She also just loved to have fun.  Here you see her in her Mercedes convertable which has a license plate of "OUIEEE."  ("Whee!" get it??).  Robyn and I were roomies at the Noble Circle retreat merely by co-incidence....but we often scheduled treatment together.

Just 54, Robyn had been fighting breast cancer for a while.  I think she originally was diagnosed in 2008 and it came back either in 2009 or 2010 with a vengeance.  When I met her, spots on her liver were getting better, but she recently had it attack her brain and her spine.

Two weeks ago, I had treatment with her and was concerned that she was having difficulty getting up on her own.  She maintained that it was muscle weakness caused by coming off Decadron too quickly.  Friday, I sent her some texts to which she replied, even though unbeknownst to me she was in the emergency room. I am glad that the last text I sent her said  "You are very loved."

As I have said, with getting treatment, you will come to know people who don't win the battle against cancer.  On the other hand, just before Robyn died, the father of one of my husband's family died suddenly of an aneurysm.   You just don't know and we puny humans have very little control over this.

We do have control, however, over how we live our lives and what we can do to memorialize our friends and loved ones.  The following is a tribute to Lynn Goodwin Borgman and was posted by her mother, Elizabeth Goodwin on the quiltart message list.  Elizabeth and I started corresponding and although I asked her permission to post this, I think it got lost in the shuffle.  I am hoping she won't mind, but as it was already posted in a public arena and as I think it is a wonderful tribute to both mother and daughter as well as a good blueprint on how to live our lives, I'm re-posting it here.   I also want to point out something that Elizabeth shared with me that doesn't appear in her son's eulogy....Lynn suffered from fibro-myalgia and even though in pain managed to dance around and frolic in her quilting studio.

Lisa




"In the mid-1990's my daughter and I began meeting at QSDS (Quilt Surface Design Symposium) ---she came from Cincinnati and I came from Pittsburgh.  Lynn was already knee deep into fabric design yet she had also purchased an amazing amount of fabric.  To be honest, before our first venture I had envisioned the classes would be nothing more than a way for us to reconnect and share a common experience.  How naive I was-----the classes and the new friends opened up avenues of creativity and a shared adventure with others.

After Lynn died suddenly in 1999 I felt I had to keep involved in the quilting world immediately or else I would never venture forward into things we had shared.  My first step was to attend Quilt National '99.  Believe me when I tell you this, I had no sooner entered the door than I heard Lynn say "Mother,

don't you get it?"  I sought out Hilary Fletcher and asked her if she would like another award and she gratefully accepted.  That fall I went alone to Houston and reintroduced myself to Jane Dunnewold who knew Lynn's interest in surface design.  Jane helped me set the criteria for the award to be

given to the artist who had altered the fabric through the use of various surface design techniques.

The winners have been:  Jan Myers-Newberry '01, Clare Plug '03, Sandra Woock '05, Barb Wills '07, Sue Cavanaugh '09 and '11. My hope was that the winner would gain attention and new admirers thus furthering their career, and this has happened in several cases, most noticeably for New Zealander

Clare Plug and Ohioian Sue Cavanaugh.

As for myself I have thoroughly enjoyed many classes at Nancy Crow's Barn and will be attending Jan's fall class.  BTW, Lynn's fabric reside in my house. Lynn's son wrote her eulogy and I think you will enjoy reading it:

She pieced together quit of love

Dylan Borgman

Lynn Borgman

        Lynn Goodwin Borgman — entrepreneur, quilter, mother, and oft-times the real-life inspiration for husband Jim Borgman's cartoons in The Enquirer — died Feb. 3 (1999) at age 44 of an apparent pulmonary embolism. Today, we share a eulogy, edited-for-newspaper format, written by Lynn and Jim's 16-year-old son, Dylan.
        My mother loved fabric.
        I never really knew why that was until I saw her in her studio one day, completely engulfed in her work. She was singing and dancing and sewing all at the same time.
        I knew then she loved her fabric, because fabric was part of her soul.
        For everyone there is such a medium. It may be a food, an art, a song or a place, but it is the physical manifestation of the soul. I don't think many people recognize their soul medium, but she knew — and she surrounded herself with it, which is what made her special.
        If you looked in her studio you'd see colors and patterns covering walls up to the ceiling. In a way, her fabric was not unlike herself. Every single part of her was bright, expressive, inviting.
        Each piece of fabric she owned cried out for its own special treatment, and most of the time, it was all I could do to stand there and take it all in.
        She used to say that she never quite knew what she was going to do with all her fabric, but she knew it was going to be used for something. I know now what that something is.
        I always smiled when she'd say she was a quilter, because she was more of an experimenter. Quilting was too slow. Her mind was so full she rarely had time to finish a quilt before going on to something else.
        Of course, she and I knew that if she had 10 lives, she could never use up all of her fabric.
        But now, I can see that even when she was not sewing or buying fabric, she was hard at work making a bigger quilt. I can see her final masterpiece in its entirety. She made every one of us into a piece of her quilt.
        When you look at her fabric, you see its texture, its color, its individual beauty. Some pieces are large, some small, some are geometric and some are irregular. Every one is a part of her mind and body.
        My piece reminds me of her brightness, her beauty and her grace. I will hang it above my bed and it will protect me in my darkest hours. If we are ever sad, we can look at a piece and remember we have a gateway into her soul.
        As we go back to our lives, one might think her final quilt has been shattered. There is nothing farther from the truth. By talking about her, sharing stories and grief, we sew each piece of fabric together.
        So the quilt will not be destroyed but unfolded, revealing its beauty. It will reach from as far west as California to as far east as New Jersey, from as far north as Alaska to as far south as Florida, it will continue to stretch to Europe and Africa.
        Anywhere we go, we cover more of the world with her love.
        Each piece of her quilt is beautiful in its own way, but only when it is seen from above, will the true beauty be seen. I hope that wherever she is now, she can look down and finally know what her quest in life was.
        Her quilt will be with us always. With what she has given us in her short-lived existence on this earth, we can warm the world when it is cold.
        Dylan Borgman, 16, lives in Hartwell and is a sophomore at Walnut Hills High School. Pieces of his mother's quilt fabric were distributed at her memorial service."

The above was originally posted on the Quiltart message list by Elizabeth Goodwin

It's been an Odd week

Sometimes you end up having really interesting experiences when you least expect them.   I've been having tenderness in my toes.  Well, to be more precise, I have a sore big toe which feels like I have an ingrown toenail brewing.  You see, I can't see my toenails well enough and I can't manipulate the toe-aiil clippers to trim them properly.  And then in the evenings when I go to bed, I feel my big sore toe.  I know...too much information.  But anyway...So, I went to the doctor.  After a mix-up (the front desk forgot to tell the doc and nursing staff that I was waiting),  I went in and I thought I was going to have a quick time of it.

Not so.  After he had examined me.  He looked at me and asked if I minded him asking me about cancer.  I said sure.  "How long does it take to come to terms with a diagnosis?"  Hmmm. 

That's a tough one.  I think it is pretty much on an individual basis, but there is, I think, a progression.  At least it was for me adn for most other people I've talked to or heard talk about it.  First there is a numbness, then a feeling of despair as you think you're going to die.. imminently.Then, some people get angry, some people go into a period of denial, and me? Well, I felt like I had a job to do and I went into warrior mode. For most people the word "cancer" strikes fear because it is usually seen as a horrible death (and often it isn't) as well as being an absolute death sentence (it isn't...being born in a death sentence.  Lots of people survive cancer but everyone will die some day).  

What was so interesting is that he looked at me and said, "You thought you came in here about your toe...you really came today to help me.   I've just been diagnosed with salivary gland cancer."  Wow.  I wasn't expecting that one.  But I feel for him. He's a doctor. Doctor's heal people and so for him, there's another element that he has to wrap his head around.

Friday was my last chemotherapy treatment.  I will still go in to get my port flushed and every three months I will get an IV of Zometa to help with my bones and ward off further bone mets.  I will miss seeing my friends, the people I have been getting treatment with for the last 9 months.  You really meet some of the most interesting and inspiring people in the treatment room. 

I can honestly say that most people are very positive and nice. I did meet a very negative person on Friday, which was interesting. 

Hopefully my eyesight will return...as well as the feeling in my fingers and feet, although I'm not so sure about that.  I will certainly NOT miss having a dry mouth from the drugs. The sensation of waking up in the middle  of the night with your tongue completely dry is not something I enjoy.