Girls just wanna have fun

B and E are off to camping adventures in New Hampster.  That means A, I, the katz and fish are left to our own devices.   Let the wild rumpus start!

It was raining this morning, such a perfect Monday morning to stay under the covers with the purr balls keeping me company.  Instead D and I met at o’light:30 and put in our hour on the golf course.  We’ve been so faithful of late, and are enjoying our committment to one another and ourselves.  I had haircut #2 today.  My friend and hair cutter (and woman-in-the-know) told me that the last time I was there (for my first cut post chemo), the others who were there said something after I left about wishing they were brave enough to cut their hair as short as mine was.  “Oh, if they only knew!” she said, knowing very well what it feels like to have renewed faith in hair folicles.  I swear, not a day goes by without a comment.  SOOOOO, here are some pics of the curly locks.

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As you have probably noticed, I’m not much for showing myself here, but it really isn’t fair to keep the hairy details from such faithful readers.  One thing I love about the instant gratification of digital photography is how willing teenagers are to hang out in front of the camera and how goofy we can get without trying.   

You may recall that this story started about a year ago while B was in Alaska.  We all are heading out there at the end of July.  There’s something right about this timing for me and us.  No it’s not a beachy vacation that some 16 year olds dream about, but there will be beach.  There will be fishing in the deep pacific waters.  There will be hiking and connecting with friends.  There will be a nice ferry ride from Haines to Juneau with wild life and glaciers.  There will be puddle jump plane flights from Juneau to Haines, and Juneau to Sitka.  We are all pretty stoked about this.  There will be lots of day light to see our way into a new year.

When it is just A and I, it doesn’t seem to take very long to get into our rhythm.  There is affection each day, conversation and snuggling, music and quiet.  I am ever grateful for her presence in my life, and for the boys for getting out of our hair so that we can be girls together without interference from the Y chromosomes.

G.O. = Guarded Optimism

I suppose I’ll find many uses for the G.O. initials.  It has morphed for today.  I had my annual mammogram.  Short story: the radiologist doesn’t want to see me for 6-12 months (they are bowing to the opinion of the surgeon on that call).  That is good news for all intents and purposes.

Why Guarded Optimism?  Well, I’ve heard this before.  I still have dense tissue, so they are not the easiest things to read.  SO I went into the appointment just wanting a disc with my 2007, 2009 and 2010 images on it to take to Dr. Surgeon, breast specialist, when I go see her on July 1.  That was accomplished.  I was not nervous.  I didn’t loose sleep the night before.  I just went in like I was getting an x-ray on my ankle or something.  The very kind technologist knew my story.  I really appreciated that.  (My 10th grade spanish teacher would have said “PUNTO!”)  She asked if there was anything to screen on the left side.  I laughed and stuck out my chest like a prancing pony, very proud of the neat and very flat area where my left breast used to be.  Apparently some post mastectomy people have tissue left that is squishable.

So if you’ve never been to a mammogram it’s really something.  All the techs I’ve ever had have been really good at what they do.  Now there are markers on the press to line things up nicely for the digital imaging.  For some reason every time I go for mammograms, the woman before me got to have the BIG paddles.  They always get replaced with the smaller ones for me. 🙂

BTW: I saw a funny card that said something like “if women ruled the world” and it had a picture of a female doctor standing next to a mammogram machine.  The squisher was down at groin level and there was a man in a johnny trembling next to it. 

So here’s how it went:

Tech: Wow, you’re tall, let me raise the platform up a  bit.

Me: (I’m not really that tall, you know.) Yea, so I’ve been told.

Tech:  Position your feet facing the rig, relax your shoulder as I position your breast just right.  Can you lean in toward the machine (read: ‘squisher’)  a little more so I can get all the tissue and muscle?  Right arm up here, ok?  Can you square your shoulders and step your feet back a little so you are leaning in?  Turn your head, ok?  Here comes the scraaaaaaaape along your chest wall.  Sorry about that.  Just want to get as much as I can. 

Me: (leave the ribs out of it, ok?) Yea, I can appreciate that.  (ooooooowwwww!)

Tech:  I’ll just go back here and take the image…oh, why isn’t the machine taking the picture? Let me see.

Me: (the longest squish on record, I bet…it’s actually hard to breathe in this position) (I’m invisioning that I’m having the first mastectomy performed on the mammogram machine today… just cut off all circulation, sort of like what they do to little lamb cojones by tying them off and letting them drop…)

Tech: Are you ok? It’ll just be a sec.

Me: (straining) Yeh, sure, I can do this.  Gravity wasn’t doing a very good job at helping the migration of this thing, so this should help.

Tech: That was really funny.  There, it will release in a sec.

She pivots the machine so it can squish in a semi verticle position too.  The images were good. 

I am in what is called a ‘diagnostic’ catagory now for 5 years.  That means I get to wait while the radiologist grabs the hot potato and looks at the images for a diagnosis.  She came back in less than 5 minutes with the good news.  I had to wait longer to get the images on disc than the entire procedure.  THAT’s what I came for.  SO it sits on my bureau awaiting my trip on Thursday, next.  The reconnaissance mission continues.

War of my life

I was walking by myself the other morning listening to music.  The song below came on and resonated, hence today’s thoughts.  (Not the best video, but I like what he says at the beginning and how intimate the venue was for the performance.)

I just went to the mail box and there was one letter in it.  It was from my PCP, the form letter that starts with “I’m pleased to inform you…”  Pap was negative.  And so we are off to a good start on the observation of endometrial tissue.   I was trying to come up with a good analogy here, and reconnaissance came to mind (thanks to B‘s infinite supply of words).  Reconnaissance is a mission to obtain information by visual observation or other detection methods, about the activities and resources of an enemy or potential enemy. The song is called War of My Life.

I would imagine it is interesting hearing a G.O. say that she feels like she is in the war of her life.  I’ve been asked by several people over the past few weeks what’s changed for me because of all of this (diagnosis of and treatment for breast cancer).  I’ve noticed that I spend a lot of time just blank, probably looking like I’m formulating some profound answer.  Nothing very profound comes out in my opinion.  I am still going through life fairly happy.  Whenever I do something that is not in the ‘how to prevent cancer’ literature, I pause and sometimes feel like a weak mortal who can’t even save her own life.  Whenever I do something that IS in the ‘how to preven cancer’ literature, I wonder if I can get extra credit if I do a little more.  You know, if you eat a big mac with a diet soda, can’ t the diet soda cancel out the fat in the big mac?  If you say no to ice cream cake at the office, can’t your body “roll back” that many calories for the day??

I do feel like there’s been an intrusion.  The cellular integrity within my system has been breached.  A  foreign army has come to the rescue to kill the damn soldiers that brought dis-ease to the bod.  Now I’m trying to evict the foreign army because IT doesn’t belong in here either.

What is left?  What residue from the chemistry?  What will my body do with the radiation?  What will the radiation do to my body?  Are there any enemy cells hiding out somewhere?  Am I the same person I was?

Well the only question I can answer from that bunch is the last one, with a resounding YES AND NO.  Many have said that cancer has a way of coralling the spirit that was already present.  I’m still me.  I know the glass is half full.  I don’t give up easy.  I suspect having crossed the cancer barrier I am different.  The cancer didn’t hurt and through the point of diagnosis I was not feeling sick from it.  The treatment we chose for this was harsh and made me sick.  That was a battle I and we chose to fight.

Before this I was doing things fairly intentionally, but did get carried away when a shiny object sparkled in the distance.  Now I am doing things fairly intentionally and really enjoying the sparkly diversions.  Someone I have not spoken to in a long time called today and APOLOGIZED for not knowing what I was going through.  She and I made a date for lunch and she asked if my full time job could allow such a thing.  My response was that it will allow for such a thing because I’m not going to miss out on shiny opportunities.    I remain grateful for the job I have which can afford such an arrogant posture.  Really.

I do feel like my body is now on hyperalert for UFOs.     I’ve got the Angel Brigade and there is a new addition to the parade of ghosts that marches in my wake.  For me the ghosts have to do with the compromises I and we’ve made in order to evict the cancer.  The ghosts know how sick I got from AC.  They know what people who love me had to witness.  They remember what it was like to get a breast amputated and to hear that nodes were positive.    The ghosts know how hard it was to confront hair loss and live without it for over 6 months.

I’ve said it before.  It is what it is.  I’ve got no choice but to fight and I’m not going to roll over and play dead.  The Angel Brigade (that includes any readers of this blog) was and is my army.  I am permanently enlisted in your army as well if you’ll have me.  We all have something to fight for.  Here is a quote from a magnet that my kat loving friend D sent me during the battle:

I do not think we know our own strength

until we have seen how strong love makes us.

Come out angels, come out ghosts
Come out darkness, bring everyone you know
I’m not running and I’m not scared
I am waiting and well-prepared

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run

I’ve got a hammer and a heart of glass
I gotta know right now which walls to smash
I got a pocket, got no pills
If fear hasn’t killed me yet, then nothing will

All the suffering and all the pain
Never left a name

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run
I’m in the war of my life, at the core of my life
Got no choice but to fight ’til it’s done

No more suffering, no more pain
Never again

I’m in the war of my life, at the door of my life
Out of time and there’s no where to run

So fight on, fight on everyone

So fight on, got no choice but to fight ’til it’s done
So fight on, fight on everyone
Got no choice, got no choice but to fight ’til it’s done
Fight on everyone
So  fight on

No news IS good news

Before I knew it, it was almost 2 weeks since the last entry. I saw a dear, fellow snow-loving friend at work who said that she checks the blog every Tuesday and Thursday and was so excited that there were no entries because it must mean all is well.  (There’s a G.O. if I ever met one.)  Indeed.  Thank you all who are still faithfully checking. My plan is to keep this blog going at least through my meeting with the surgeon at which time we will review the mammogram I am to have this month. I have had more thoughts and believe this is still the forum for them.

Well a quick update is in order.  I had follow ups with both oncology and radiation oncology last week AND my annual PCP visit.   Bone density is NORMAL.  Liver funcitons are NORMAL.  Blood counts are NORMAL.  I have not heard about my Pap results, but they said I’d get a call if there was a problem and a letter if there was not, and I have not had a call…yet.  Oncology wants to order a CT scan of my torso and pelvis before my next follow up in 3 months,  just to monitor activity on my liver where something showed up in the early CT.  The follow up PET showed nothing.   

When I spoke with the radiation oncology PA, I learned that the radiated skin now has something I will call cellular memory.  If I go out in the sun without SPF 50,000 on 🙂 the pink rectangle of radiated skin will emerge, even if that particular part of my anatomy is not directly exposed. When she spoke about the next radiation oncology follow up, I asked how many different providers I would need to continue to see. Who’s the boss, sort of. I asked the same question to Dr. Oncology. It seems to me that this is another issue that does not necessarily have one path to follow. Basically here’s what I’m taking from this: having 3 or 4 eyes and hands on the issue (or the TISSUE to be exact), is not a bad thing. I can spread out the visits so if I have them every quarter, a different provider is providing input. Not a bad thing, but it opens me up for confusion and differing points of view.   I NEED A GURU!   Ok, maybe not, but I do have to think about what I want to do with all of this. For the next 6 months, I’m just going to follow the path. Surgeon in July, Oncologist in September, Radiation Oncologist in December. All info will go to my PCP.

5 weeks into Tamoxifen, I’m feeling mostly well.  I have a really annoying rash that is not going away along the radiated skin and on my lower left ribs and up my neck.  At the follow ups we thought it might be just the pathway out of radiation, but I’m reading that it can also be a reaction to tamoxifen.  Because it’s so localized, I’m not so sure it’s from Tamoxifen, but if it’s still driving me batty on Monday, I’ll give Dr. Oncologist a call.  I was offered steroids for it, but you know me, GEEZ.  I’d rather have needles stuck in me…in fact I have an acupuncture appointment this week.  For now silvadene at night and cortaid during the day seem to work fine.

On the subject of the PORT-A-CATH.  I left the oncology follow up without remembering to ask, so I called and left a message, simply wondering what is to become of the thing that has been so incredibly helpful through all of this.  The perdiem nurse who was in that day called back and said ‘if you want it out, Dr. Oncology said it would be fine to get it out now.’  Since then, I’ve thought about it with the 3 month CT scan in the future and wondered if I should at least wait until that point.   Two days later I received a call from Dr. Oncology’s regular nurse who said that some people leave them in for years and years.  She recommended waiting at least one year before considering removal.  I assured her that it is not causing me problems.  Going to have it flushed (every 4-6 weeks) is not a problem either, just remembering to schedule it might be challenging, not impossible.  The thing that is most on my mind is that it is and has always been a bit troubling to and E.  Neither of them have liked the bump in my skin from the day it was put in.  A reminder of the need for pretty serious medical intervention.   This will be something I talk about both with Dr. Surgeon and Dr. Oncology, inviting myself into the known potential conundrum.  I’ll keep you posted on that.  For now, the port-a-cath will just continue as part of my anatomy.

I am still showered with complements on my hair.  This is from people who know me and are fierce cheerleaders AND from people I’ve never seen before.  A cannot stop herself from just constantly running her fingers through it.  She thinks it feels really cool, which it does, I have to admit, from the inside AND on the outside.  But after one of her indulgent head massages, I feel like I should look like the guy on Eraserhead.  IF you have not seen that movie, DON’T bother.  You can just imagine what the main character looked like with a name like Eraserhead.  The hair growth itself continues to thrill me to no end, and it is really amazing hair. Dense, thick, curly, all different colors.  Because of whatever is happening with my estrogen, I’m kind of fuzzy on my jaw bones too, which is just another thing to marvel at in the marvelous petri dish that is my life.   I’m not the bearded lady, mind you, but it’s there.

Art work?  Not much.  I am active.  I’m walking, gardening and doing stuff outside.  Taking time for art is just not what my body wants or needs at the moment.  Our garden looks beautiful thanks to the perfect conditions we are experiencing this spring.  In fact if I don’t pick some of the lettuce today, we might miss out on some delectable leafy greens.   

I have a mammogram on the 22nd.  I will write between now and then, I promise.  B is wondering if we should start a new blog for the purpose of keeping in touch with those of you who have been so faithful on this site.  Neither of us are interested in social networking in the big picture.  I’m not so sure how I feel about it.  Email works for me.  This whole experience of sharing my/our thoughts has done more than serve the purpose for which we created it, and I’m really happy about that.  Obviously I have no idea where it will go from here.  Comments about that would be really helpful.

Two entries in as many days.  Wow, I better not strain myself!

For the love of Nancy

You may recall that I had been visiting my 84 year old friend during all of this.  Well, Nancy’s life ended last night and it was on her terms.  If we all could be as ready as she was and have our wishes known and followed as hers were, I, for one, would be very grateful.   

I visited Nancy after shaving my head.  We were having tea and she looked at me after a steaming sip and reached out to touch my head.  “You have a perfect skull, you know, not everyone could pull this off.”  Some days when I came to visit she was still in bed, and one time in particular I leaned over her and said “Good morning Nancy!” and after she opened her eyes and realized who had the nerve to interrupt her slumber, she smiled as I took off my hat.  She raised her hands to rub the stubble, eyes closed, and said “my friend with the perfect skull”.   

Our visits were not particularly long nor were they as numerous as I would have liked them to be, but they certainly were intentional.  Every gesture and word was intentional.  Nancy sometimes struggled to get her brilliant thoughts from her brain to her mouth and sometimes it just took time to accomplish the task.  There was no haste to make waste.  I found myself listening intently almost so hard that I got caught up in the visual of her mouth trying to form the words and would miss the point.  She was very forgiving anyway, so when I said something in return that was totally out of the ball park, she moved right along with me.  Bless her heart.  She was incredibly thoughtful and supportive of my ups and downs during my own treatments, and certainly saw me at vulnerable moments.

Nancy lived with her daughter, my dear friend S, since well before I was diagnosed last summer.  I had been granted cart blanche with regard to visits.  This was such a gift to me.  S was very generous in sharing her mom.  In addition to what I’ve already shared, there are three specific memories from those visits that I want to write about.  I had the priviledge of not only visiting, but taking care of Nancy for a couple hours one day.  We took care of her needs, had our tea and conversation, and decided to get outside.  It was a beautiful day.  We wheeled her chair out the long dirt driveway and one of the cats jumped right up on Nancy’s lap, muddy paws and all.  She loved it.  When we got back to the house, she said that she needed exercise, so we took the walker out and made a lap around a small area in the driveway.  At this point in Nancy’s life, walking was a chore as she could only really move her feet maybe 4 inches with each deliberate step.  She made fun of herself as she walked along because she had to concentrate so hard that she lost track of the position of her body, and would find herself bent at a 90 degree angle before too long.  Well, we were walking up the ramp, Nancy was at about  a 98 degree angle and stopped for a very long pause.  She finally said “what on earth is that?”   I got on my hands and knees, trying to judge the path of her sight to find whatever it was that caught her eye.  I could not believe it when I saw it.  In the crack of the deck board, there was a tail of a mouse, something one of the cats apparently had left as a gift.  We laughed and Nancy said “OK, now, look at me.  I have completely forgotten how to straighten up.”

On another occasion, I dropped by unannounced.  Nancy was sitting in front of her beautiful old wooden blanket chest and was polishing it.   S was guiding her hand along and they were talking and laughing.  I loved seeing this because it epitomized their relationship from my perspective.  S was a fierce advocate for her mom, and seemed to provide as many opportunities for her as were possible, even something that seems so simple like polishing a cherished piece of furniture.  That visit Nancy was working to say something as we had tea.  She was pointing to her neck and finally grabbed a gold necklace that she had on.  She communicated to S  that she wanted S‘s older sister to have that particular necklace.  S always took note of these things, and reassured Nancy that she would be sure that her sister got the necklace.

On one of my last visits to the house, Nancy was sitting in her recliner by the window.  When I pulled a chair up snuggly close and leaned over to give her a big smooch on the cheek, she said “you know you are ‘myfriendpatty’, it’s all one word and I want to be sure you know that”. 

Last Sunday, S and I visited Nancy at a nursing home she was admitted to about 4 days earlier.  She was sleeping when we arrived and when I greeted her I said “hey Nancy, it’s yourfriendpatty”.  We had a great visit.  We got her ready for the day and had breakfast.  Working with S to get her ready was amazing.  She knows her mom so well.  She put the T in TLC. Nancy was contemplating reality and asked on several occasions if something that just happened in her mind was our experience as well.  I knew from conversations with S that Nancy was ready to exit the body that was just not working any more.  She’s been ready for quite some time, actually.  Sitting here today, I feel very fortunate to have had that particular visit with her, only 6 days ago.

The next day S called me and told me Nancy was on her way to a Hospice house.  Something had happened, and Nancy was able to give full consent for NO medical intervention.  S said she was very clear with the doc that she knew that it would lead to her death. 

I visited Nancy the next day at a beautiful Hospice house where the doors are wide enough to wheel hospital beds out into the gardens.  Nancy was in bed, fairly sedated.  When I bent over and gave her a smooch and told her that herfriendpatty was here for a visit, she opened her eyes and her breathing haulted for a moment, it seemed that she recognized that it was me.  S‘s family was very kind and welcoming, even in their private grief, to make room for so many who were able to come to say goodbye.  While I was there S took Nancy’s necklace out of her pocket and gave it to her sister, just like she’d promised.

The last time I saw Nancy, she was resting fairly peacefully.  A friend was playing the harp for her.  I held her very warm hand, stroked her hair and told her a few things I wanted her to know.  Less than 24 hours later, S communicated that Nancy was finally able to make it out of the body that could no longer house her vital spirit, with her grandson reading poetry (Yeats) to her as she left.  just emailed the end of the poem:

For he comes, the human child,
To the waters and the wild
With a faery, hand in hand,
From a world more full of weeping than he can understand.