Author: Patty Morini

Acts of Kindness

** 2016 We still have interest in this blog, and have moved it to a new server.  The images are mostly there – but the quality is poor so we will be working on that.  Also  many of the links are expired or removed… we’ll keep working !

I entered my last post on 2/14/2011; 1 and 1/2 years after starting this blog. We have decided to leave it on line in the hope that someone may benefit from some of the things we learned on our journey from breast cancer diagnosis through the end of treatment. It starts here with the last entry. If you would like to read it from the beginning, you will have to navigate back to August of 2009. If you see the calendar on the right side, the dates in red are the posts. Thank you for your interest. If you would like to comment, please do, we will graciously receive it in our email.
With appreciation,
P

There is no better way to sum this up than by honoring all of you.

I thought you might want some music to read by. (from one of A‘s favorite movies)

 

  • You listened and cried when I spoke about my diagnosis for the very first time.
  • You paid attention to our kids with extra encouragement and love.
  • You worked as a team to keep our household going.
  • You reacted with profanity when you first heard about my diagnosis.
  • You took me to get my first pair of cowboy boots.
  • From as far away as Minnesota, California, Pennsylvania, Oregon, Florida, Arizona, New York, Colorado, Alaska…England and Singapore, and as close as the room next door, you prayed and thought about me and us.
  • You encouraged me to take drugs when I could not make the decision to do so myself.  AND you supported my decision NOT to take drugs the majority of the time.
  • You sent cards, cards and more cards.
  • You gave me angels.
  • You sent $ in a card and encouraged us to get a take out pizza for a quiet night at home.
  • You coordinated a community of food providers…for weeks and weeks and weeks and months.
  • You made me a snowman.
  • You made great food and delivered it to our door, putting it in our refrigerator when we were not even home.  Whole meals in a basket, treats by themselves. “Meals on Mondays”… food ordered out at places our kids LOVED, every Monday night after scouts.
  • You showed up at our door from afar with a pot of chili and a really cozy life is good sweatshirt.
  • You agreed to come over for a spontaneous head shaving.
  • Every visit you’d end by asking “What else?”  You gave so generously of your time.
  • You left fresh flowers in a mason jar at the bottom of our driveway.
  • You offered my partner support of his very own.
  • You gave me candles and lit some of your own.
  • You found a tree for our katz to play, climb, sleep and scratch upon.
  • You crafted and donated the above mentioned kat playground.
  • You had flowers delivered specifically for our children.
  • You hardly even knew me and you presented me with really warm slippers because your friend’s feet were cold after chemotherapy.
  • You left Calvin and Hobbs comics in our mailbox for us each week.
  • You gave me T-shirts with really meaningful images on them.
  • You found ginger chews that I could actually STAND to eat which helped me when I was nauseous.
  • You invited our children to get the heck out of Dodge for the afternoon, evening or weekend…skiing, meals, movies, sledding…
  • You transported me and sat with me at chemotherapy treatments.
  • You played your harp for me.
  • You did Reiki when you felt I could use the energy exchange.
  • You gave simple gifts representing hope and messages about how strong love makes us.
  • Right before I went under anesthesia, you told me you’d take care of me, I can’t tell you how relieved I felt.
  • You made the biggest lasagne we have ever seen.
  • At every infusion you took such tender loving care of me.
  • You took our car to the mechanic for us when it needed work and we couldn’t figure out how to get it there.
  • You put entries in and you read the blog, so faithfully, and you offered comments full of love, encouragement and thought provoking questions.
  • You worried that you were not doing enough.
  • You were not afraid to call when the urge struck you.
  • As my skin broke down from radiation you offered sincere compassion and, thankfully, a prescription for silvadeen.
  • You visited me with your nursing expertise after surgery to make sure things were looking ok, watching me empty the drains, and helping us read the pathology reports.
  • You shared jokes and laughter, hikes and slumber parties, massages and hugs.
  • You sent a house cleaner to us every other week.
  • You sat in silence with me.
  • You supplied us with a whole bunch of natural cleaning products.
  • As a woman-in-the-know and as a survivor of other cancers, you offered words of encouragement and advice, sharing experience, hope and strength.
  • You helped me put the garden to bed in the fall when I had no energy.
  • You sent us steak and yummy soup mixes in the mail.
  • You gave me really nice lip balm and moisturizers.
  • You offered to take a chemotherapy treatment for me .
  • You snuck over to stack our wood until the whole pile was gone.
  • You offered thoughts, love, prayers (I know I’ve said this already, but you were always there…)
  • You made drawings and paintings for me.
  • You made incredible bread for us.
  • You spoke with your haircutter about wigs before I lost my hair.
  • You told me you didn’t want me to die and shared a story of someone at your elementary school who died of cancer.
  • You presented me with beautiful mugs and soothing teas.
  • You held on tight.
  • You reminded me to keep my eye on the ball.
  • You called and checked in on us on Sundays while you were having your morning Joe.
  • You were honest with me about reactions to surgery, and about how you didn’t know how to relate to my body.
  • You helped me find a balance where cancer wasn’t the only thing we talked about.
  • After my visit to the “fitta” you said: “I have to check you out now girlfriend, stand back so I can take a look at you.  I want to make sure you picked the right one!”
  • You actually wanted to look at my incision and scar, and asked questions.
  • You gave me scarves and beautiful hats, I thought of you whenever I wore them.
  • You rubbed my head and my hair as it grew in…and still do.
  • You had tea with me.
  • I’m not even your mom and you sent me texts of love and support.
  • At home you tolerated me, even when it may have been hard for you to see me in whatever condition.
  • You snuggled with me and purred me to sleep with your paws on my arm.
  • You responded in amazing ways to our Walk4Hope team, walking by my side, making donations with encouragement, rowdiness and whacky love.
  • You designed our “SAVE SECOND BASE” t shirts.
  • You made me a pair of beautiful earrings.
  • You were not afraid to touch my scar.
  • Before you died, you told me that you had no doubt that I would be ok.
  • You took me for a walk in the woods, on the golf course, on your property, on the beach.
  • You admitted that you stuck your head in the sand (good thing you kept your pants on or you’d have sun burn you-know-where).
  • You shared your daughter’s homemade soup on your porch as we looked at visiting cranes in your field.
  • You took me on a kayak excursion until I was too pooped to paddle.
  • You raced down the ski hill with me as fast as we could go.
  • You gave us a weekend in your beautiful ocean side cottage.
  • You looked at my drawings and talked with me about them.  You shared your drawings with me.
  • You gave me cool socks.
  • You carried my load at work and completely supported whatever I needed to do.
  • You dropped in.
  • You found special talismans to help me center myself.
  • You gave me reduced rates for my alternative treatments when it was a challenge to pay for everything.
  • You made homemade pillows (tie dyed, even!) for my neck during chemotherapy and to put under my arms after surgery.
  • You gave me a prayer shawl to keep me warm during infusions.
  • You did not charge me for haircuts before or after chemotherapy.
  • You made me a drawing of an angel.
  • You rubbed my back until I fell asleep.
  • You spoke to me about ‘getting things back’ after losing so much to treatments.
  • You walked and walked and walked with me.
  • You told me I had a nice skull when I was feeling particularly unattractive.
  • You told me your reactions and encouraged me to talk about the rough times.
  • You kept the cowgirl theme going.
  • At the top of the mountain, you rubbed my stubby head with your mittens.
  • You kept me warm when I could not make my own heat.
  • You sat with me while I cried and laughed with me until we cried.
  • You gave A and E your open heart and safe places to talk (or text) when they needed to…at school…at your house… with your parents…at the game…anywhere.
  • You made a wish for me.
  • You put one hand on the top of my head and an arm around me when I could not soothe myself.
  • You understood that my body has emotional memory even where it has lost sensation.
  • You kept your vows.
  • You cut your beautiful hair off when I had none and I did not feel so alone.
  • While I was going to sleep at night you’d snuggle up and take my hat off and put your hands on my head.  You told me that it was hard to see me without hair.
  • You showed undying, tenacious, hard core unconditional love.
  • You climbed upon your horses and rode by my side, a stampede, taking my reins when I could not wield them…corralling as much G.O. energy as the universe could stand.

Supporting someone or a family who is going through a significant event does not have to be complicated or costly.  The simple acts of kindness, the pure selflessness and the resulting experiences of humility, grace and connection generate amazing depth and profundity of thoughts and feelings.  The experience of receiving such kindness is the thing that we will all take from this.  Our children, especially, will never forget you.

My horse and I are well acquainted.  Sometimes I wonder if I was actually on a new horse at all?  Perhaps it was a new way of riding or a very different trail than I ever anticipated for myself or my family.  All I know is I’m here, 19 months after a breast cancer diagnosis.  Challenged to make my body less friendly to an invader, motivated to move forward, living every day to the best of my ability, in full awareness of the gifts that surround me.  Feeling so brightly blessed to have the connections that I do in my life.  Ever grateful for your love.   P

Curly-Angel-150x150

Reflections on a theme

P: As we wind down, we wanted to put our thoughts down about whatever we are thinking on this side of things.  Now that I’m in my flow again, I’m asked quite frequently how this has changed me and us.  A said “It hasn’t really changed us.  We were really lucky to be a good family before and to stay a good family after.”   B says “It can’t not have changed us.  Something to do with a tension or balance between being stronger and at the same time, being aware of the frailty of our lives.” E said “I can’t say no because it’s kind of one of those experiences that you don’t just shrug off.”  I don’t know what to say.  I appreciate the question and do my  best to give the answer time when I’m talking with those interested.  I could probably spend a weekend answering the question.  I think all of the responses above combine how I feel about it all.  I and we were very fortunate to have a foundation of whatever A means when she says “good”ness in our tiny family and our love extensions.  I mean, WOW when I say that the love penetrated the walls of our house and our hearts.  If I feel changed it is so largely because of what we witnessed and received as we were going through it all.  (Please see my last entry which I will eventually post entitled ACTS of KINDNESS.)

When I see my scars, the tiny tatoo markings used to direct the radiation (which I’m seriously considering changing into something more meaningful…),  the rectangle of different colored skin which I put lotion and aloe on every day, my nails which may never fully recover, when I examine my chest wall on the left side and my healthy right breast, when I find myself playing with my curls during a really good day dream; sometimes I indulge in an “oh yea” moment and sometimes I just look at something shiny and move on.

B: P has asked me to de-brief as we wind down this blog. First, I cannot express the depth of my appreciation for the folks who cooked for us, for the folks who gave our kids rides, indeed for all the varieties of generosity that was heaped and poured on us.

For, partners of someone fighting a cancer fight I have some observations about how I should have handled certain things differently. The intensity and focus to keep our lives as “normal” as possible was huge. Indeed, I achieved too much velocity… perhaps, a better metaphor is trying to land a plane on an aircraft carrier. Maybe, it is more accurate that I came in for landing attempts with far too much speed. I’d say that I’ve now crash landed after numerous attempts at more elegant but too fast landings. Partners be aware that a part of you withdraws from the person fighting the disease, particularly as the bad news or complications pile up. After treatment ends it is hard to extend those parts back into the relationship. Nine months was about the point where I did start ripping heads off and shitting down necks. I found myself in customer service situations where poor service was rendered and just about wanting to destroy the organization. For me nine months was my wits end. Find those things that replenish you and do them, but, be very careful in identifying them, be certain they replenish.

We are apparently out of the woods so far as P’s health is concerned the Drs. all give us positive results and optimistic prognosis. And I think I’m going to bank that. It is time for P and I to sort out what a new normal is and I’m glad that we get to do that.

P:  Thank you ALL for keeping the faith and checking this blog, as the entries were posted farther and farther apart.  It really touches me that you kept checking.  Thank you for all your support, encouragement and love.  If you can hang in for another few weeks, you won’t be disappointed.

Was I in denial?

Since I have not gotten things together yet for my and our final entries, I still have some thoughts to share with you.  I was out for a really cold walk yesterday morning, even my eyebrows froze!  Walking always gets me thinking.  Some things happened this week, like the stars aligning or whatever. 

First I finally got around to listening to a December recording of “Fresh Air” with Terry Gross. She was interviewing Dr. Marisa Weiss, a breast oncologist who was diagnosed with breast cancer in April of 2010. I was, at the time, most interested in what she was saying about nutrition.

Then I was sent a link to CaringBridge.com to visit a website for a colleague of mine who was recently diagnosed with colon cancer. He spoke about immediate changes he was making to his diet in his first entry.

THEN on Saturday I was working in the commissary at the ski lodge and I saw someone who I have not seen since last year.  She said “Have you always had curly hair??” and I let her know it was post chemo hair.  She was shocked. I have not verbalized that in a while.

All this got me thinking about how I’ve sort of gotten back into my old saddle almost like the past 18 months never happened. What a crazy feeling that was. I dug out my copy of ANTI CANCER a new way of life and began to re read it.  Back when I was first diagnosed, my chiropractor recommended that I speak to an elder in the field who had his own experience with cancer.  He recommended this book and said if I could not come to see him, this would be the next best thing.   I looked through it, read some and put it away. That happened with a lot of the literature I was given at that time. No energy or concentration to absorb it all I guess.

I decided to run another detox week and spoke with B about my desire to learn more. I indicated that being on a separate eating plan from the rest of my family was not appealing to me and you know what he said? He told me that it wouldn’t hurt any of us to change the way we eat for the health of it. Just what I needed to hear.

The author of the Anti Cancer book is an MD PhD who was doing brain research.  He and his colleagues did scans on their own brains for research purposes. They found a tumor on his brain basically by accident. The book was published in 2008 and he was reporting 14 years cancer free at that time. He did extensive research on the subject and has a list of recommended foods for those who had specific cancers. His premise is basically to strengthen the immune system with the right nutrients to fight off specific types of cancer.  

SO, I’m 2 days into my detox, which is a good way for me to essentially reset my food intake. We have a relatively new market near by which features locally grown and organic produce. I’m going to scoot in there this week to take note of what they have to offer. I usually purchase organic when I can, but I’m feeling like I need to get more consistent, especially with whatever source of protein I choose. This will be somewhat of a financial challenge, but we’ll just have to deal with it.

I wanted to put my thoughts on the subject down.  It’s so easy for me to not look back or remind myself that I had cancer.  While I move on, I want to remain mindful. I don’t want my body to be a good host to cancer cells.  That’s for sure.

Team Ra Ra Kicks Breast Cancer

Hi Everyone,
136 former cheerleaders got together to do a dance routine to benefit “Susan G. Komen for the Cure”. Each time someone views the video, United Healthcare will make a $0.10 donation to the Komen organization. Their goal is to get a million hits, which will lead to $100K raised. Please consider taking a moment to watch the video – and, perhaps, pass this link onto your network of friends, family and colleagues.
Thanks!

It’s 2011

Yes, I let the holidays sweep me up in the tide of good tidings.  Before I got caught in the undertow, I did go up for an MRI and a visit with Dr. Surgeon, who I guess I’ll call Dr. Follow-up now.  I am visualizing her hanging up her surgery hat before she enters the exam room when I’m there.

SO Dr. Follow-up came in smiling, commented on my curls, told me I looked well.  She also said that the CT scan looked great… (I’m thinking, yea, but I’m here for the MRI follow up).  Then she said as she was showing me a piece of paper in the chart “This is a short report….”  “Short reports mean that no malignancies were found, and that’s exactly what we want!”  She did an exam of my chest wall, and of my healthy  breast and proceeded to ask me how our trip to Alaska was.  She’s a keeper.

I have oncology and radiation oncology follow-ups next week.  And so it will go.  At some point I suppose I’ll decide that I don’t want to keep on doing follow ups with 3 doctors, but for this first year at least, I’m following all recommendations for such appointments.  After I’m 1 year from my last treatment, I’ll think beyond my nose, AND I will go back to giving blood.  (The red cross told me that they only require that people who have been diagnosed with cancer be 1 year out from the last cancer treatment, with no further cancer detected.)

We had a wonderful day on the mountain yesterday, it was about 50 degrees, the warmest in our 10-12 years of hiking on Jan 1.  We ate clementines and threw the peels over the edge, sending old mojo into the abyss and setting our sights on the year to come.  The kids made a tiny snowman.  We spend the better part of our day around loved ones, nourishing our bodies with some great food and nourishing our hearts with love and laughter.   Here’s to putting 2010 to bed.

Snowman-@-Frenchs-150x150

The splendid view from the top!

On the lighter side

SO my walking partner D and I proclaimed that this is day 1 on the march to the Solstice.  Only 182 1/2 days to go to the longest day of the year!  We trudged in the snow this morning at 5, declaring that we were in the O’light:30 time zone rather than O’dark:30.  The sky was cloud covered, there was not even a hint of glow on the horizon…not even in the direction of the largest Wally World.  But we sang what we knew of the Boss’s “Cadillac, Cadillac, hmmm hmmmm hmmmm, Shiney and Black” song and did a fantastic improv of “You Are My Sunshine” in honor of today.  The black dogs that are our faithful walking companions didn’t mind a bit, in fact I think I heard them humming along.

I am ever grateful for you D.

Really, I have two more entries and this will be a done deal…it’s just taking time, so I’ll keep you updated on post cancer treatment related scanning until we are done.  I’m getting the MRI follow-up results (from last Thursday’s scan) tomorrow. 

Thanks for continuing to check in.

Waiting Room Recipes

When I pick up a magazine in a waiting room, I immediately look for the recipes. The ones with pictures are my favorite and really draw me in.  Have you ever seen a picture of something that looks really tasty only to find that the recipe was NO WHERE to be found? It sometimes inspires recipe rage. OK, maybe not RAGE, but I’ll admit to feeling let down. Having had some experience now in waiting rooms, I have been witness to many different ways that people pilfer recipes.  Here what I’ve encountered:

1. Ask the receptionist if s/he could make a photo copy.  Most will do this happily.
2. Write it down with your own pen and paper or borrow some from the office.
3. Rip it out of the magazine without feeling any remorse.
4. Look around and see if anyone is paying attention to you.  If the answer is no, remove the page from the magazine being careful not to draw too much attention with the ripping sounds or your look of intense concentration.  Fold it up quietly and slip it into your pocket, wallet, underwear or sock.
5. Take the whole magazine and vow to bring it back at your next visit.  this is especially possible when recieving radiation as your next visit might very well be the next day. They will hardly miss it!

I could probably publish a fair sized cookbook from all the recipies I…um…found.  It would be a shame not to share them, so here’s the list of some of the yummiest looking ones. Some have actually made it to our table.

Sloppy Veg-Head Joe
Mud Pie
Pasta with Fire Roasted Vodka Sauce
Winter Minestrone Soup
Ancho Pork and Hominy Stew
Mexican Chocolate Cookies
Homemade Chocolate/Peanut Butter Pudding
Corn and Salsa Tortilla Soup
Spaghetti with Clam Sauce and Grape Tomatoes
Grilled Hot-and-Sour Shrimp with Watermelon-Watercress Salad
Halibut with Corn Gravy
Devilish Sesame Chicken with Green Beans and Scallion Rice
Chicken and Edamame in Lettuce Cups
Whole Wheat Chocolate Blueberry Cake
Chicken with Caramelized Cauliflower & Green Olives
Braciole with Grape Tomatoes
Salmon Steaks with Tricolor Pepper Relish
Balsamic-Glazed Short Ribs
Greek Lamb with Spinach and Artichokes
Beet and Apple Soup with Horseradish Cream
Smokey Tomatoe-Salmon Chowder
Walnut, Artichoke and Goat Cheese Strudel
Chicken Rolled around Asparagus with Apricot Glaze
Easy Oreo Truffles

Oh and if, uh, you saw a picture of one of these dishes but could not find the recipe…let me know, I may be able to help you out.

Waaaaaaitingggggggggggg

I just received the appointment for my risk assessment follow up.  12/21/10.  It leads me to think that risk assessments are not of an urgent nature like CT scans and the like…it doesn’t FEEL urgent to me, but it DOES feel like information I’d like to have.  Making the decision about participating in a risk assessment felt like a sort-of-kinda-medium-big decision on a scale of really small to really big.  Even though I was put in a low risk catagory, the actions I might take if I were to come up positive for the BRCA 1 and BRCA 2 genes, are fairly major.

Before I published this entry, I received a call this afternoon offering an earlier appointment for the risk assessment results.  Apparently Dr. Genetic Specialist works only one day a week at the Cancer Center, which I was unaware of.  Even so, I’ve been given a 12/7 appointment…that’s next week.  I think I can do that.  BTW, all is going well.  I feel well.  My hair continues to curl and make me smile every day.  I’m a little itchy these days, but am dealing with it.

There are a couple more planned entries and I think we’ll call this a wrap.

No news yet

Frustrating:  I received a denial from the insurance company for the several thousand dollar genetic test.

Relieving: It was because of a coding error.

Frustrating: I called the social worker and told her this and that I have not heard back about results, leaving a voice message.

Relieving and Frustrating: She left me a message saying “no problem” regarding the coding problem, and said nothing about the results.

Frustrating: I called and left another voice mail asking her to check out whether the results had come in.  And now it’s Friday at 6:15pm.  SO I will have to continue the waiting game.

The doc thinks I’m extremely low risk for a positive genetic test result, but even so, I was told it would not be more than 2 weeks.  It’s been over 3 weeks now.  I don’t mean to whine, but when waiting for cancer or genetic test results, I’d take a clue from our elementary school.  One day when E was in probably 4th grade, the principal of the school called me at work.  The first thing she said was “Everything is ok.”.  This was an incredible relief to the sudden realization that my son’s school principal was interrupting me at work.  The “Oh by the way, the test was negative.” kind of presentation, is really not one I recommend in this arena.  BTW the principal was calling to tell me that  a child who was recovering from a bullying episode on the playground said out of the blue that “E….is always, always is nice.” 🙂

What can I do about it anyway?  Not much.  SO life continues to go on, and I’m pleased that it is what it is.