1/8/10

Feeling better means getting back to work means having less time to do the things I’ve come to realize are SO important to me.  And so it is with blogging.  I’ve felt real good this week, and have been back to work AT work most of the days.  When I picked my kids up the other day after school and took them shopping for some new jeans (they just keep growing for some reason…the kids, not the jeans), we got home after our usual dinner hour and I was exhausted. Oh yea, and that morning D and I did our walk at O’dark:30.  Pretty much useless, I ate the great meal B prepared, and crashed in the recliner, a puddle of mush.  Yesterday I worked another whole day and thus, I decided to work from home today…but not until after the chiropractor, food shopping and a nice ski with D and our goofy and swell canine companions.

Growing hair is a very serious business.  I think the next baby I see I will appropriately hail them for their hard work!  Now that I have a little more than a 6 o’clock shadow, I’m antsy for more…MORE…MORE!  I never even thought about the process probably because A (our first child) had about 2 inches of hair when she was born and with E, the poor neglected second child, I don’t think I observed as much about the fuzz as I did other things.  So this brand new hair is really funky and has started to have a mind of its own.  I can keep my hats off in the car as long as the heater is on and at home, much of the time, if I’m close enough to the fire or the wood stove (or having a hot blast).  It’s liberating, truly.  I must remind myself that it could all fall out tomorrow, though not the usual outcome of Taxol as a second round chemo drug, apparently.

B has referred to Taxol and radiation as the suspenders part of treatment.  I feel I’m somewhere in the bog of life between “Oh man, at least this isn’t as swampy as it was earlier.” and “Hey, is that high ground over yonder?”  I just keep walking, just keep moving, just keep trudging, just keep laughing, just keep resting, just keep waking to face each day.  SO another character that could give you a sense of who I am is  ‘Dory’ in FINDING NEMO.  She endears the hearts of some viewers and annoys others.  BUT her  “Just keep swimming, just keep swimming….”  song keeps coming to mind as I move throughout my day like when I still catch myself saying “wow this is really happening” as I glance my fuzzy head in the rear view mirror.

I cannot / will not spend a lot of time dwelling on what we have been through over the past 4-5 months.  Nor am I spending much time thinking about a reoccurrance, no more than I would wonder about getting hit by a bus each day.  I no longer feel like I have breast cancer, but I  am reminded every day by one thing or another.  My body is my body and I think I’ve adjusted as much as I can at this point.  I’m feeling really good still about the decision not to do any reconstruction as I continue to heal and regain my flexibility.  I feel waiting on reconstruction has given my body time to heal from one thing.  I have not been wearing many layers because of the hot blasts I am getting several times a day.  My usual turtle neck and sweater winter wear is still in the trunk in our bedroom.  I’m wearing one layer, often just a long sleeved cotton shirt, and have felt fine about my body.  It is like I’m not even thinking about it any more.  As I’ve said before, I suspect this will resurface in the spring / summer when I wear my bikini everywhere I go.

So in the area of how I’m doing on Taxol after 5 infusions,  I’m definitely feeling the extra dryness in my skin that is more than just winter.  I’m not feeling tingling at this point in fingers or toes, but am asked that every time I go for the infusion. It is a side effect that I am taking very seriously as neither I nor our oncologist want permanent damage from these suspenders.   My several times daily application of skin cream entails pretty rigorous rubbing to stimulate circulation and keep my nerves alert (my words).  My nasal passages are still like the desert.  I have caught a cold this week, but it feels normal for a cold.  I am tired and am intentionally laying low this weekend.

I didn’t blink and neither did she

One of my coaches is telling me today was #5 of 12.  I saw that in my drawing as the mandala or circle is filling with images of my progression.  I love how this is evolving for me.  The static nature of image #1 and the movement through to today’s image which does not feel static to me at all.  P.S. I was not naked during the infusion…well, in the spirit of being honest, under my clothes and boots I was.

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Another non blinking moment happened today.  I was sitting in the waiting room waiting for my lab appointment and a couple entered.  It’s so interesting to see how people do things, isn’t it?  Many, many times when a male is the patient and he is accompanied  by a female , she has the clipboard with the weekly nursing assessment form on it, and she proceeds to fill out the form.  So this couple fell into this process, she interrupted his cell phone call to ask if he’s had any constipation or diarrhea this week…does he feel any pain today…is he afraid he migh fall?  She had beautiful moca colored skin, royal blue pants and a light blue top on.  I loved the colors immediately.

I went into the lab, two vials filled with no hiccup on the port  draw and back into the waiting area by the fireplace awaiting my nurse escort to the chemo suite.  The woman mentioned above looked at me and said “I think I know you…how do I know you?”  Here I am with my head wrapped in a batik scarf, a purple watch cap over that, and a flap hat with great tassles on my head (so much for being incognito!) …I said something like “well if it is from a work memory, I’ve worked at the same place for 20 years”.  I told her where I worked and we figured out that I had done a workshop for teens in 1988 and she was on of the facilitators.  “We made masks. I still have mine.   It was and is to this day, very important to me.  I just wanted you to know.  I’m sorry to meet you here…”  Her partner was called in and the conversation ended with her holding her hand out to me in a very kind gesture.

I went back to chemo chair #5 (no view this time) and started doing work related stuff.  So cool that I can work (if I feel like it) during these treatments.  I don’t really like to admit that I’m a multi-tasker, which I am at times, but I do like that I don’t always have to use my earned time when treatments happen.  It’s tricky working on a lap top when I’m getting scanned or under anesthesia, but chemo infusions of this nature are another story.

I took out my pad once the chemo part of the drip started and the benadryl effects were wearing off  and the above image just poured out with no thought on my part.  This image enchanted me from the first mark I made.  So as I was drawing and rocking out with my music, the woman mentioned above came over and tapped me ever so softly on the shoulder and asked if I minded if she visited with me for a few minutes.  I unplugged myself and closed my pad to give her respectful attention.  I felt blessed by the overture.  Here’s a synopsis of what she said:

I am so sorry that I’m seeing you here after 22 years but at the same time I feel like it is an opportunity to tell you something that I may never have had the chance to tell you.  I was always the white sheep in my black family.  I didn’t feel like I looked like either of my parents, and my natural talents were from somewhere else apparently.  It was an ok childhood, but I was unsettled.  When I made my mask with the teenagers that day, I saw my face for the first time in 3-D.  I saw my father here (she pointed to her chin and her nose), my mother here (her eyes), my father again here (her forehead).  It was so profound it took my breath away.  I had to excuse myself for a minute or two to gain composure.  For the first time, what was I, late 20’s?, I felt that I belonged to these people on a very deep level.

I still have the mask hanging in my house.  When I have days that I just don’t feel like I fit, it reminds me that I belong to that family.  You were just so postive for the children in the workshop, and I benefitted in a way I never imagined I would.  I wanted to thank you.

We spoke briefly about how amazing mask making can be and about the fact that she has been with her husband for 30 years now.  A few minutes later she said “Can I get you anything?  Some tea or something from the kitchen?”  and I graciously declined, pointing to my water and thanking her for taking the time to visit with me.  She got up and touched my shoulder again and joined her husband at chair #1.

This infusion went without a hitch.  I was struck by how fast the time went and I was out of there in 3 hours flat.  The nurses marveled each time the I.V. timer went off, and checked their watches to be sure 15 minutes had elapsed for whatever drip.  Sure enough the timer was working correctly.  It really flew.  I completed my drawing and it was time to have the port access removed.

I went to work and attended staff meeting and a meeting with a colleague in person.  I’d planned to go home to rest and work the rest of the afternoon there, and kept to the plan.   When I got home my eyes were really in need of shutting.  The katz were very pleased to find me in bed at 1:30 or so.  I slept for maybe 1/2 hour and felt rested, and just hung out with the felines for another 1/2 hour before getting back to work.

I have noticed that I may be irritable on occasion.  Skin’s dry. I am chewing on these great ginger chews (the only ginger stuff I actually enjoy).  I am eating more frequent, smaller bits and just trying to be aware of my gut.   I had a little headache going into chemo, but drank more and ate some and it has subsided.  I feel, like other infusions, that I’m aware of the drug(s) going through my system.  Not uncomfortable, just more aware of the path through my body than usual.  I feel like I’m dodging the side effect radar.  If I stay low to the ground and speak softly, maybe I won’t be detected.

I am humbled and so grateful that I WAS detected today by someone who had a wonderful gift for me.

Open to a New Day

Finally I’ve finished the drawing from cycle 4.  I feel open.

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Since we moved to our home 12 years ago, we’ve been saying good bye to the old year and welcoming the coming year with friends in a way that has become so dear to me.  We hike up a mountain near our home together, send wishes for the coming year out to the fresh air and beautiful vista, eat clementines and ultimately end at our home for a feast.  This week there have been warnings of a storm of the century which had some of the usual attendees hunkering down in their homes.  It was beautiful to wake to a light snow, branches shadowed in white, and the knowledge that it’s only Friday!

The festivities actually start out on New Year’s Eve when we make the capaleti that my paternal grandmother served on January 1st.  We have been blessed over the past several years to have some friends come to help.  As with most old Italian fare, making capaleti is a labor of love.  It has become a ‘don’t blink or you might miss it’ experience for me since my kids and friends have joined in.  We talk, we laugh, we get flour everywhere.  I consult with my favorite picture of Pop and I on the texture and thinness of the pasta.  In years past, Mom and Pop would be making their capaleti around the same time we were, and getting the dough as thin as possible was somewhat of a competition.  There are other experimental dishes that B and I each make along with cheesebread, sausage bread, antipasto and delectible contributions from those who join us.

Today we joined our friends and the walk up the trail was spectacular.  The white blanket on our trail took my breath away today.  I was with some of the people I love most and out in the beautiful woods.  My energy was good, I only halted when I got a hot blast and had to pull over to shed my hats.  At the top we ate clementines, took pictures, spoke about letting go and opening to the new.  Kids climbed trees and others tried to catch some zzzz’s on the snowy rocks.  I quietly scattered the hair that was shaved off in September where I hope birds might find it for their wintry nests.  I took my hats off and let the snow melt on my head.

At home the fire was just enough and the company more intimate than many years.  The capaleti got the best ever vote, finally we used the right size cutter, got the combination of ingredients right and the simple broth was delicious.  B’s Jalapeno Pork Stew with pickled onions and our vegetarian options of Curried Peanut Soup with fried bananas and an Indian curried black eyed peas were scrumptious!  But the most delicious part of the day for me was my feeling of being cradled by love.  Don’t blink or you’ll miss that one.   I think I can speak for those who attend this each year.  It’s a great way to start anew.

Today I don’t feel like I had breast cancer.  I was not reminded much that I am in the middle of round 2 chemotherapy.  I awoke in the quiet early of a snowy January 1st morning.  I hiked with friends.  I hugged my friends.  I laughed and heard the laughter of children.  I made angels in the snow.  I had no trouble letting go of 2009.

I met an angel today

Yea today is Round 2 Cycle 4 Day 1.  These numbers are becoming less of a focus for me.   With the eye on the ball, we are keeping our stride.  Cheerleaders on the sidelines are reminding me we are 1/3 the way through this portion, and that is WONDERFUL to hear!  (thank you for carrying that part so I don’t feel the need to) The infusion (or invasion as  brother M calls it) went fine.  We have a regular nurse who is just wonderful.  Actually they all are, but K is our nurse and is just the right match for us.

Technical information about today: the waiting room was PACKED early this am when I galloped in.  I get comments on my boots at least once each visit.  I usually go to the lab first to access the port and do the blood draw for the labs that have to be read before infusions begin.  Today K came and took me back to my chair (another chair with a beautiful view of the fields and gardens behind the center – not all the chairs have views) and accessed the port and did the draws right there.  All is well in my blood.  As you may recall from previous entries, sometimes there is good blood return when the port is accessed (this is crucial to see that the port is working properly), and sometimes there is blood return but not enough for the labs.  You may recall that sometimes we have to do creative positioning.  Today we did that.  If anyone who ever gets a port reads this, please have faith.  Skilled nurses who know about ports know it’s about positioning much of the time.   You will come to have confidence in knowing your port well.  We reclined the chair and I put my hand behind my head this time.  It worked like a charm.  The benadryl and zofran were the first drips after the labs came back.  Then the Taxol.  4 hours later I was on my feet.

A long side note:  4 hours at the center is not a long time.  My particular regime is to get labs drawn which takes about 15 minutes if we succeed accessing the port quickly.  I get a nursing assessment (weight, vitals, symptom check, medication check) and then we wait for the lab results which usually takes 15 to 30 minutes.  (I’m in the chair by this point).  Then they start the hydrating drip, and the benadryl (a very small bag) and then a flush and the antinausea med (another small bag).  Then 1/2 hour wait.  THEN the Taxol (1 hour).  Once that’s all done the port gets flushed so it does not get clots and I’m outta there.  There was a man next to me who started when I did and was on basically the same schedule, however after I was leaving he was starting a 3 hour drip and had another med after that one.  There are so many cancers and chemo regimes.  I am grateful, in a funny way, to have the cancer with relatively short treatment episodes.

The chemo room is completely open with curtains for semi-privacy when needed or requested.  Conversations are fairly open.  I am struck by how many people just starting out ask which of the 3-4 antinausea meds that they have been prescribed to start with.  It seems that everyone gets told to just try them out.  When I started out, I heard “stay ahead of the nausea” and asked “how do you know if you are even experiencing nausea if you are taking meds before you feel it?”  “how do you know which one will work?”  I heard “when you feel nauseous just take one and see if it helps…if it doesn’t help, try another.”  and asked “how do I stay ahead of it if I am waiting to feel it and it comes on strong?”  If I were going to give advice at this point, it would be to think about what feels right to you.  I went with something else as my first line of defense.  (acupuncture and herbs and careful eating)  This is because I hate taking medications.  I will avoid it whenever I can.  B had me take the whole arsenal on the first day with AC (after I was completely empty from diarrhea and was just moaning with nausea) he couldn’t stand it any more.  I eased back a lot and chose not to do any steroids.  I also decided on the one drug I thought seemed to be the least harmful to me. I can be really stubborn in spite of myself, but this is what I chose.   Remember when I asked what would you rather be nauseous or constipated?  It’s a serious thing to consider.   I have not felt nauseous during this phase of treatment so far.

I could not do any blogging during the infusion because of technical difficulties…alas.  SO I worked on knitting a great colorful flap hat and did some other stuff instead.  My drawing is not quite finished, so if you want to see the 4th panel of that drawing you might want to check back some time in the next day or two.Cycle-4-of-12-150x150

SO this is not what I want to spend time on.  I feel I have to share an “if you blink you might miss something like this” story.

I left the center and had a couple errands to do.  You know, bank, book store, gas up the car.  I was about to exit the gas station and on my second look to the left a very small, older woman was trying to catch my eye.  I opened my window (mind you, I had my glasses and a crazy hat pulled down over my ears) and here’s what transpired:

“Could you give me a ride to town?  If you drop me off at W….  street I can walk the rest of the way.”

My immediate thought and comment was “Absolutely” and I made room for her in the front seat.  My second thought as we were driving was “what reason would a person not do this?”  I came up with a bunch of reasons and let them go as my passenger told me about some important things in her 77 years.

“You know I left my house this morning to do these important errands and when I got to the gas station (about a mile from her home) I stuck out my thumb and this really nice man picked me up in his truck and you know what?  He took me right to the DOOR of the place I needed to go.”

She told me of her 26 year marriage and the death of her husband 10 years ago.  She showed me the picture on her driver’s license and said how happy she was that they were going to use the same one for the renewed license.  She had a perfect crescent smile, toothless, and the biggest brightest brown smiley eyes I have seen.  Her wrinkles were like webs of light supporting the joyful expression on her face.  As we laughed, she reached to touch my hand that was on the stick shift, two times.  A gentle feathery touch.

She mentioned her road name at the start of our trip and I took her to her doorstep, 3 1/2 miles from our starting point.  As she got out she said because of the arthuritis in her spine, it takes her a while to get out of cars…she handed me the papers from her errands and got out.  She looked at me and took a great breath and said “I hope you are having a happy new year even though it hasn’t started yet.  You are going to have many, many, many happy new years!”  She took her papers, shut the door and continued talking all the way to her door (maybe 4 yards away).  She turned and smiled at me and blew me a kiss  and said “your first kiss for the new year”. 

I smiled the whole way home and could not wait to tell the story.

I feel great emotionally.  I feel really close to great physically.  I met an angel today.

I especially like this rendition of Another Day In Paradise by Phil Collins because I like what he is doing with his hair.  Don’t you?

Home on a rainy December Sunday

We left at 5 something in the AM on Wednesday for our holiday fiestas.  We have the usual stops for bladder relief and coffee/tea.  At our second stop about 3 hours from home, we pulled into the parking space that a very salty car vacated in the crowded parking lot.  One of the kids said “Hey, look who’s next to us!”.  Our neighbors and friends (my walking partner D and her family) spent the night 3 hours from home and had just started their trek south.  It blew our minds!  We arrived at a rather unfriendly and crowded roadstop and were greeted by warm and loving hugs, laughter, and OMG’s.  The mighty leaf organic breakfast tea never tasted so comforting.  

A bit further down the road I saw a billboard.  It was pink and the woman was saying  “I never gave up.”

Traveling went well.  I was really into the music I was listening to and was almost over the top happy on the road. (Sometimes it’s a little much for my family when I’m like this, I must admit.)  We pulled into our destination (a warm home to ourselves, vacated by our kind Aunt who was on her own adventure) and were followed into the driveway by a delivery of a fruit bouquet from a childhood friend and her family. 

I am so glad we took the plunge and went down for a few days.  The timing at the start of our trip was so cool.   I am feeling well and am SO grateful for that.  OK, my skin is a little dryer than dry, my nasal passages are winning the Sahara Desert Award and my family says that Taxol makes me act like I have Attention Deficit Disorder.   I don’t really suffer with the ADD thing because it seems to just be an enhancement of my usual from inside my own body.  The dryness, well, it is soothed by things like good skin cream and steamy showers.  I’m not really sure how others feel about the Taxol effects but it seems tolerable.

Seeing Mom, all of my brothers and sisters in law, most of our nieces and nephews including some of the canines, some of our cousins and their children, other relatives and friends was wonderful.  The love was a little more intense (if that’s possible).  There was something slower about my interactions with everyone, a longer glance, a squeeze at the end, long cheek to cheek hugs, talking in whispers.  I was accused of being like our kat Guiseppi who just gets right into head scratching as I leaned into anyone who was rubbing my head.

I was struck by many things.  When I saw Mom for the first time, I had my cotton hat and my hat with the bells on and she said “Let me see you!”.  I took one layer off and she said “What’s with all the hats?”.  I took the other off and said that I had to do something to keep warm.  She said “Why did they cut off your hair?”  As we were hugging and I explained what chemo does, she looked at me with her failing eyes and said “I’m so sorry you have to go through this.” 

I was struck by the two children (ranging in age from about 8 to about 12) who asked me how I was doing.  Each of them found me at a quiet moment and sat or stood next to me at the Christmas Eve party.  The youngest one said “I am so sad that you have cancer.  One of the teachers at my school had cancer and died.  I don’t want that to happen to you.”  She told me that when her hair was out of the pony tail that it came down to her waist and asked if my hair would grow back.  Her sister found me just before the CRAZY gift swap.  “How are you Aunt P?”, and she put her hand on my shoulder.  The sincerity in her eyes and the way she tilted her head took my breath away.

I was struck by the optimism and open heart of another who is dealing with his own cancer.  So up beat, so in the NOW.  Seeing he and his family was wonderful. 

I was struck by the love.  It was everywhere.  It was between our children.  It was in our quiet Christmas morning, just the 4 of us…It was in the food we prepared, the food we ate, the laughter.  It was in the air.  It was intoxicating everywhere I went.   B’s glances, arm around my shoulder, touch as he passed by, warm hand on my cold head, reminded my why I said “I do”.

I was struck by the conversations.  I was GRATEFUL that conversations were not only about cancer.  In fact, most of them were not.  I am grateful to have seen my loved ones, and that they got to see me and my family. 

Breast cancer did not make me feel sick…not at all.  The treatments made me feel sick temporarily, the surgery made me feel sore temporarily.  I don’t feel sick  right now.  The images we create of someone going through this must be tainted with fear and unknown because the common statement that I heard over and over was “You look terrific!”.  I was with people who have known me forever.  I know it was not my outfit or doo rag that they were seeing.  It was my energy, the color of my skin, my eyes and smile.  It was my posture and attitude and humor.  They were finally able to see me without the breast cancer filter that distance creates, if that makes sense.  I was just and still me.

Today it’s pouring in our neck of the woods.  We are nesting after days away.  We are preparing for the kids to have a week off, and for B and I to attempt getting them where they’d like to be, getting us to work and dealing with cycle 4 which starts tomorrow.

12/22/09

I’ve felt really good all day.  Went to acupuncture and showed off my improving range of motion in my left arm.  I truly think the herbs and acupuncture are helping tremendously with my tolerance for Taxol.  I worked most of the day.  We are packing for the holiday with family and will take off early dark tomorrow.  I am not sure about whether I’ll post anything before Saturday when we return.  Don’t fret, the katz will be well taken care of by a friend who loves them!

Have a fun and delicious holiday, whatever you are celebrating.  Travel safely if you are going anywhere!

Peace, Love and Snowflakes

Round 2, Cycle 3, Day 1

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9:00 am: I’m having my infusion right now.  It’s going without a hitch.  Blood draw was immediate, they took enough blood, labs looked good, 25 mg of benadryl is the standing order now instead of 50 mg.  I may set a record for getting out of here in less than 3 hours.  B is home with a terrible head cold and apparently he called me a few minutes ago.   I didn’t get the call because I have my phone on vibrate and it’s in the left pocket of the shirt I’m wearing.  I have no sensation on my left side, so I could not feel it vibrate.

I can get up to go to the bathroom during infusions.  I just have to unplug the IV machine and drag the IV tree with me.  As I was doing that today I had the thought I have occasionally:  this is really happening.  When I’ve seen people dragging their IV bags around with them in hospital or movies, they usually look very weary of the road, just wiped out.   (how’s that for stereotyping??)   Here I am with my cowboy boots, black pants, B’s flannel shirt and a Santa hat, feeling tall and unfrail,  walking to the loo with my IV tree.  Surreal.

I went snowshoeing with D yesterday.  It was perfect.  A beautiful day, a bit chilly with the wind, but it felt so good to get out there.  When she called we were both talking about having things we needed to do.  Taking an hour out of a day that’s full with I WANNADOs can be a hard thing to do.  But that hour was more than an hour of my time.  It was time in the fresh air, moving my body, chatting with a good loving friend, laughing, throwing the ball for the dogs, smelling the winter air, living life fully.  I took my poles with me and my arm felt really good with the movements.  I think I can make 2/3 of an angel wing on that side now.  Thanks D for the walk and for always meeting me out there, even when we go at o’dark:30.

6:15 pm:  All’s well.  I’m thrilled about this.  I’m working a bit and getting excited for Christmas.  I plan to work in the AM tomorrow and home to rest and work if I can…trying to be careful.  B scanned the photo and I put it up on the Uncle Charlie entry if anyone wants to go back to see it.  I think we all could benefit from taking that posture from time to time.  I miss him.

Kids found their OWN rides tonight to hockey and bowling…they are developing some independence.  SO B and I are home alone (well, the katz and fish are here too).  Aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhh.

Uncle Charlie made me think

Amidst breast cancer treatments life goes on.  THANKFULLY I am feeling good so we’ve been very busy, as a family with two teenagers tends to be.  The GUPDATE on the hot and sour soup is that it was FABULOUS (with no repercussions)!!  Along with our Maine family, I have a relatively large family of origin and we have had an event.  My mom’s brother died last weekend.  He was 91.  At my wedding almost 20 years ago he and I were dancing and he told me I was his favorite niece.  A few carefully placed steps later he said “you’re also my only niece”.  I never realized that until that moment.  There may have been fewer girls in my family, but we certainly are GEMS!  (Mom’s side  had 4 boys and me in our family, Mom’s brother had 3 boys and a girl and Mom’s sister had 4 boys and Dad’s brother had 2 girls and a boy.)

Anyway, I’d been talking with Uncle Charlie more frequently since his 91st birthday in October.  Our conversations were always tender and full of humor and love.  We were able more recently to relate to one another’s medical issues and he was always very encouraging.  On the Saturday before he died, I was on a long call with my brother and I noticed Uncle Charlie was ringing in.  I don’t know how to work that darn call waiting thing, so I made a note and called him back on Sunday.  He sounded so tired.  Basically he said “All I can do is sit and think and I don’t like that.”  This is coming from a man who has been very active all his life.  I don’t know for sure but I think he was playing golf until maybe 2 years ago?  Always appearing fit both in mind and body, my uncle was very much alive.  We spoke of gardening and he is the one who told me the missing piece to my pasta sauce…my grandmother never put onions in her sauce.  I will miss those tid bits that can only come from that generation, so I’m planning on squeezing as much as I can out of my mom (87) and her 93 year old sister.  (Their other brother’s ship, the U.S.S. Sims went down in the 40’s, and we never had the honor of meeting him.)

Uncle Charlie and I spoke about cancer and about how we each were working to try not to make it the ONLY thing in our lives.  Since his birthday, his  medical issues were becoming the ONLY thing in his life.  This was so disappointing to him.  He had a wonderful partner who lights up rooms when she enters.  He had a wonderful daughter who was there much of the time.  He had terrific and very funny sons and grand children and great grand children and nieces and nephews and friends and siblings who loved him.  But this was not enough to sustain his enjoyment of living.  When I asked my dad what he thought about his own mortality, he said “why would I want to leave this wonderful family?” , but the time came when he was able to let go.   I got the sense at the close of my call with my uncle that he was on the brink of making a decision for himself.  This decision was not one he necessarily wanted.  He was a full blooded, first generation Italian American, and there was no darn way that he was going to linger.  I was not there when he died.  I don’t know the whole story.  But from the bits and pieces that his children, my cousins, have generously shared with me, I think he made his decision to leave this body behind.  The last thing he said to me was that he knew my treatments were hard, but that I would be fine.  “You just have that way about you, only niece Patty, and I love you.”

SO, what does this have to do with A Family’s Life with Breast Cancer ? Well, I have never had a life threatening illness before.  Just thinking about that gives me pause.  My body was attacked and we fought/are fighting to permanently evict the intruder.  My body is NOT tired as Pop and Uncle Charlie’s bodies were.  I plan to give it my all, like usual, and live fully.  I’m not tired.  That is what makes a possibly shortened life very sad to me.  However, in spite of all of this, I don’t put myself in the catagory of someone who will die prematurely.  I went to a follow up appointment with the surgeon yesterday.  I stopped when I got to town and picked up a salad and right there was a beautiful bouquet of Gerber Daisies.  And yea, they were pink.  So I snatched them and when I got to the reception desk, I asked the nurse to put them in the doctor’s office.  The doctor greeted me with a big smile, a thank you and hug and checked out the incision site saying that it looked great.  We spoke about follow up care.  She will now be ordering my mamograms and I will see her at 6 months and then yearly thereafter.  I like the idea of her being on my team now.  We spoke about the meeting with the radiologist and this current chemo.  “Basically the cancer is out and Taxol and radiation gives you the best chance of avoiding a reoccurrence.”   So I thought maybe I could now say that I HAD breast cancer…hmmmm.  I asked her if she knew the numbers relative to doing radiation or not.  We have decided that it will happen, but I was curious how that changes our odds of reoccurrence.  She said something about “the survival rate” and I didn’t really hear the rest of what she was saying.

Lately I go along with my days, grateful beyond belief that I’m feeling as good as I am.  SO giddy about this sprouting dark hair on my head.  Thrilled at the thought that the cancer is OUT thanks to chemo, surgery and tons of prayers and loving thoughts.  And in my Winnie the Pooh way, I say, OK, what’s next? Let’s move on.  Some have told me that it’s “OK to share” my feelings, it’s “OK” to have down days.  I may be fooling myself and others, but I don’t usually have down days.  I don’t usually dwell on things.   Maybe B or A or E would have other things to say about how I am.  I know when I’m tired I’m short tempered, but that has nothing to do with this journey.  I’ll ask them.  I know that I have today. I know that I do not choose suffering.  There were darker, sadder, more tired days during the first chemo episode.  But I think the readers of this blog are getting all I got.

Uncle Charlie gave me some of his last thoughts.  That is a gift.  He showed me a lot about living life fully.  Numbers and survival rates are not as important to me at this point in the journey.  When we were planning the course of treatments they certainly were, but at this point, we have decided to go the length of this marathon and sometimes questions like the one I asked the surgeon can become obstacles.  At every family affair Uncle Charlie ALWAYS found a place to park his body and close his eyes.  At our wedding it was in his suit on the lawn next to the patio.  At reunions he always found the hammock.  His usual posture was on his back with one ankle crossed over an elevated knee and his hands clasped across his chest, eyes closed.  That is the indellible image I have of him and it reminds me to trust the process, to trust my sense of what my body needs and to dig deep into my sense of spirit and peace.

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Round 2, Cycle 2, Day 2

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Well cycle 2 has started.  I asked for rides this time just because I wasn’t sure about the benadryl affect.  SO an angel drove me all over creation to do errands and then dropped me off at the cancer center.  The port access went smoothly even with a new nurse doing it.  I just had her recline my chair and she filled the vials no problem.  The problem that arose, however, was that  one lab order had not reached her in time, and they had to take one more vial when I was out at the chemo chair and we had to wait for those results before proceeding.  Waiting…waiting…waiting.  But it gave time for me to talk with the oncologist.  I asked if she could split the dose of benadryl in half.  She was very amenable and changed the order.  It was much easier to drink tea, draw and write with only 25 mg of that drug in my system.  It was so easy to get it reduced, I don’t really know why they start with 50 mgs.  I suspect dealing with a groggy patient is easier than dealing with an allergic reaction to Taxol.

I met someone who is the American Cancer Society Patient Navigator who works at the cancer center.  She’s a Nurse Practitioner and is the liaison that I think we were missing at the start of all this.  She basically can hook us up with whatever we need.  She has tons of information from the cancer society about funds and services available to help cancer patients.  She is a delightful woman.  She turned me on to Casting for Recovery which provides retreats for breast cancer women free of charge.  It’s a weekend of fly fishing instruction and interaction with others who’ve been there.  If you’re interested in learning more or donating to this cause, you can go to www.castingforrecovery.org.  I’m definitely looking into this.  I hope to be able to do this this summer.

The infusion went fine once we could get started.   The whole thing took a lot longer than usual because of the lab glitch, but I was keeping myself occupied.  I was asked to show some of my artwork to the nurses.  I called another angel for a ride home.  The katz and I napped and I was grateful for the crock-pot that was simmering while I slept.  Again I was careful about what I ate.  I drank a lot of water before and after the infusion and around 3 this morning I awoke with a bursting bladder.  When I woke I had some feeling in my intestines that I might categorize as mild cramps.  I was also really thirsty.  It wasn’t nausea that I was feeling.  I emptied my bladder and drank a bunch of water and when I lay back down it felt much better.

Today, day 2, I’ve felt well.  Small snacks throughout the day helped. I worked in the morning, had acupuncture mid day and worked from home in the afternoon.  A friend is bringing chinese food for us tonight and yesterday when we spoke about preferences I was really tempted to have her order some hot and sour soup…but wanted to be careful.  I told her I’d give her a gut update today.  (Gupdate for short.)  This afternoon’s gupdate was: BRING THE SOUP!

I find that when I’m asked how I am feeling, that I cautiously say “good” .  I do feel good.  We’ll see how I feel after the soup though!

John Mayer…

Today, I was looking around on www.youtube.com, at John Mayer’s music. I was watching his 2007 Crossroads performance, and then I saw,  “John Mayer – Free Fallin”, in the related videos column. Knowing the Tom Petty version very well, I clicked on it not thinking it would be very good. I was blown away, this song was almost, to me, better than Tom Petty’s version. Tom Petty wrote the amazing lyrics, and then John Mayer brought them to life, in an astonishing performance. Even though the song is about he and his girlfriend having trouble, I think very well that it can relate to our family’s situation. Maybe once it is all over, with the change, we will be free fallin’, or right now, the change is making us free fall, (not in a bad way). I have to say, I watched this song, over and over, and over, probably 10 or 12 times, and it seemed to have a new meaning each time. I can’t say enough about this song, and how it made me feel.