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. 

The End is in Sight

The end of chemo that is.  I am scheduled to get my last treatment on Friday.  My first treatment was Nov. 8, 2010.  Well, the first treatment for this go around.  It is funny, some people put the dates out of their heads.  I reamember all of them exactly, the surgeries and the chemo commencements. :)  I can't tell you the end dates on most of them though, just the beginnings.



I will continue getting IV drips of Zometa every three months.  That's OK.  I'll also have to go in monthly and get my port flushed.  My veins are pretty well gone after all this. 

Some people are often afraid to stop chemo.  I'm ready.  I know that it can come back after stopping, in fact I've had several friends have to handle that.  The good thing is that there are more treatment availble for people who have had breast cancer and failed on other chemo treatments.  I am constantly amazed at how much more is out there than there was 14 years. ago.

I'm also amazed at how the anti-nausea drugs have chnged.  CAF (Cytoxin/Adriamycin/Flourilacil or 5Fu) was hard for me.  The woman I sat next to two months ago was amazed that I had had a hard time with it in 1994....they have changed the nausea drugs and how they administer it so it is much easier now.

I'm looking forward to having my eyesight come back, then my sense of taste, and NOT having my tongue dry out at night.  I'm also looking forward to hopefully getting feeling back in my hands and feet.  It has been a bummer not being able to drive where I want when I want and not being able to read much.

I am less happy that the progress of developing new drugs is based often politics and money.  Drug companies don't put the effort into getting drugs certified if they are not going to make a lot of money on it.  People who have rare cancers often have to wait until someone either does an end run (not very common, but it has been done) or it becomes expedient.  Not what I like to think about.  I don't know what the answer to this problem is....I just want this scourge to stop...whether it is breast, pancreatic, ovarian, lung or whatever cancer. 

Secrets to a Long Life from Walter Breuning

Not too long ago, Walter Breuning of Great Falls, Montana passed away.  He was 114 years old.  Last October, he was interviewed by an un-named AP reporter and left his keys to a long life.  They are as follows:

1.  Eat two meals a day.  "That's all you need."

2.  Work as long as you can.  "That money's going to come in handy."

3. Hlep others.  "The more you do for others, the better shape you're in. 

4.  Accept death.  "We're going to die.  Some people are scared of dying.  Never be afraid to die,.  ecuase you're born to die.


I don't think that Walter meant to roll over and give up fighting, nor that we shouldn't try to live a long life, just that death is a part of living and we shouldn't fear it.  Frankly, I have a lot I want to do before I die.  But that's a lesson too...we should try to do as much as we can while we can.  Time's a wasting folks and time is something  you can't get back. 

Tomorrow I go in for the beginning of my last series of chemo.  I'm hoping that I am able to make it through the next three sessions OK.  This last one was really hard.  Evidently that decadron buzz I used to get is a thing of the past...we'll see.  I've been really tired and my eyesight continues to degrade.  That supposedly will come back after quitting the chemo. What do I miss most? Not my hair (I did laugh when I was in the doctor's office last week and a woman said to me "that's alright dear, it will grow back."  I don't know what gave her the idea that the hair loss bothered me...especially since I was sitting there in my pink Old Navy baseball cap.

I'd rather my breast grew back if we were talking about growing things back.  I do hope, however, that some of the numbness in my hands and feet goes away. The inability to get information from my feet means that I'm unsteady.  I fell in the garden a couple of times this week and whacked off the cover on the electrical to the fishpond.  I'm just grateful I didn't fall IN the fish pond.

Hopefully, the muscle/nerve/bone pain I have will also get better.  One can always hope!  And I do!

Blurry Vision

It's been an odd week.  I have found that the further along in chemo I get, the harder it gets.  OK, so you don't need an rocket scientist to figure that one out.  However, I had sort of scheduled my days depending on the "buzz" I get from the decadron in order to help me get things done.  The sleeplessness and extra energy helped counteract the days of lethargy.

However, last weeks treatment never gave me the buzz.  That's OK, because I really didn't like it, but still, it was nice to be able to catch up on things.  One of my Noble Circle Sister's who has been fighting a particularly nasty form of breast cancer longer than I have (well, she's been on chemo longer than I have) told me that after some time, the decadron didn't give her the energy either.  Today is the first day in a week which I have actually been able to stay up during the day and haven't gone to bed by 8:30 p.m.  This is my week off, so hopefully, I'll be able to get myself back in order before starting the next cycle next week.

I was beginning to get concerned.  You see, I went to my oncologist on Tuesday and was dumbfounded to have him say that I could stop.  While my markers have been falling, I was thinking that he would want them to be below 30.  I looked at him and told him so as well as telling him I'd prefer that they be 0 (not realistic) but would like them to be around 18  which isn't really a magic number, but the point at which I stopped when I was on Taxol in 1998. 

Granted...my eyesight continues to get worse, my hands and feet are VERY numb (I can't feel my feet at all when I'm barefoot on a carpet).  I have rashes on my arms, like gloves...in addition to the other side effects of Abraxane. 

I asked him what he thought about having me go one more round, a series of three weekly IVs.  He said that he often has patients ask him to continue for six more months.  I told him that wasn't realistic, but what about one more course, only because I wanted the markers to be a little lower so that my body could clean up the rest.  He told me that he was fine with that, that there was no right or wrong answer, but that he had watched me for years in the 40s (well, only a couple of years I think) and that he felt that my body was beginning to cry uncle. 

True.  It is.  At least with the fatigue I've had.  While I find it important to be able to participate in my treatment, sometimes I think that calling the shots is a bit scary.  I was wondering yesterday if I would be able to go for three more rounds.  Of course, preparing for my daughter's graduation and the party did take a lot out of me. 

Still...I could be done.  However, I think I am making the right choice.  One more, then I'll be done.  Hopefully, the pain in my hip will go away and I'll figure out some way to be able to be mobile and do the things I like doing.  One woman said that Abraxane was a horrible drug and that it ages you 20 years.  Frankly, I'd prefer to be aged 20 years rather than dead.  I am going to have to figure this one out and work hard at regaining my health.  Ah, the challenges of cancer survivors!  Figuring out the future can be a very foggy picture indeed!

Freaking out

Life has been hectic.Saturday was my daughter's high school graduation and party.  We had people coming from Washington state, Montana, Connecticut, Michigan and of course, the local area. 

Iris from my garden

Trying to get the house and gardens ready was a real feat. I had help from lots of people but found that the fatigue and pain in the pelvis I had was really a bit much to try to accomplish this.  Each night when I went to bed or often even before, I had horrific pain in my pelvis.  Since I didn't have similar pain when I had the first bone mets in 1997, I was terrified that I had chemo resistant cancer.  

The good news came today, howver, that my markers dropped again.   So, the pain, which is rather nasty, is due to a re-fracture from the damaged area, pain associated with Abraxane, or pain from the 2009 fracture from all the lifting, pounding, digging, etc.  I've been doing. 

I was really frightened.  How was I going to be able to continue to live in a 2 story house?  Does this mean that the rest of my life, however long that may be, I would continue to have pain?
Sometimes the Tramadol worked, sometimes it didn't. 

In the meantime, I am going to  hire someone to help me spread mulch, the only way I'll be able to keep on top of my garden this summer.  One of my neighbors told me that I would have to cut back.  I've been thinking that and I've been giving away plants, but there is a limit to some of the areas that I am willing to cut out.  I don't want to loose a lot of the shrubs I have and while I can, and am, reducing the size of some of the beds, others I don't want to.  Mulching and using Preen, a synthetic corn gluten which inhibits seeds from sprouting helps.  The areas in my garden where I used it last year and mulched were far easier to get into shape this spring. 

And...of course, I hope I don't have to do this next year.  In the meantime, I'm going to concentrate on the falling markers...........