Saturday, December 8, 2012

Isn't it ironic.....?

Turns out...Borg port photo out looks pretty much the same as Borg port least while all the steri-strips are still in place.   I promise I will get a NICE photo of my collarbone sans bulbous goiter, but it may take awhile...those steri-strips stay on forever!

WARRIOR bracelet, peekaboo lotus breast
The surgery went awesome, about 20 minutes, and they didn't put me all the way out, just some nice relaxing whatever (couple glasses of wine would have worked out the same) and some local injections of Lido.  The surgeon was Indian and we discussed our favorite indian dishes....mine being a toss up between Madhur Jaffrey's Lamb Saag and Fresh coriander chicken with lemon.  At 8:30 in the am, a strange conversation, but I hadn't eaten yet, and I'm not sure how long the surgeon had been on duty.  The nurse said she could have put me out totally, but said they were all very entertained by our conversations.  I guess I should feel flattered that she didn't feel the need to shut me up....   :)

I'm a little more sore than I expected, and it feels so strange to be able to move my head in any direction and not feel that now familiar tug of the catheter.

I know people have had huge celebrations, meltdowns, etc. once the chemo is done, but I actually prefer this quiet sort of celebration that this phase of my treatment is over.  I will still have to see my oncologist in 3 months (and probably like that for awhile).

I was tempted to go back and read some of my posts from last year, when I was in the thick of things, but resisted the urge.

So much has happened since then.  The lack of posts here attest to that.  I have a feeling that this blog will start turning into a recap of what's happened vs the play by play it used to be.  Time to blog is not what it used to be.  Here are a few cool things that have gone on that I don't think would have happened had I not gone through this experience:

  • I got appointed to the Lowell Community Wellness Board of Directors.  The wonderful woman who was involved with Pink Arrow Pride project had to step down after 6 years, and I'm hoping to be able to step into that project among others.  This is going to be an adventure that will take me down paths I could never imagine.  I'm looking forward it
  • I got a few extra tattoos besides "the Lotus Breast".  Because of Tracey's awesome Relay for Life speech--the youtube video is posted a few blogs back-- I got my inspiration for my survivor bracelet, which turned out awesome, then went whole hog and got my 1/4 sleeve Hanuman.  Brian started on his 1/2 sleeve at the time that I went in to get my bracelet, and after a little bit of thought we decided, after what I've been through why the hell shouldn't I get it???   I wear sweaters through most of the summer anyways, when I'm indoors.  For those of you NOT familiar with the million or so Hindu dieties, Hanuman is the Hindu Monkey god.  And for those of you who know me in person, have heard my hubs call me "Monkey" a few times.  Besides that, Hanuman represents strength, he is the slayer of demons, but the embodiment of  love.  His story is told in the Ramayama, and summed up in MC Yogi's song "Rock on Hanuman".  I LOVE the way he turned out, and of course, both the hubs and I are thinking of what else we can put on our bodies....but have decided to save a little money for the holidays and stuff.
  • I decided I want to become a certified yoga instructor.  I had planned on taking an intensive course at Hilltop Yoga in Lansing-where Brian took his, however, the funds were just not there, so I've postponed it until next year.  POSTPONED being the operative word.  Since my journey began, I've learned to trust my intuition a bit more. When things feel right-go with it, when they don't--back off and examine what's happening there.  More on what I want to do once I become a yoga instructor later....
  • Lastly, I went all 007 and did an undercover photoshoot as a present to my hubs for our 14th anniversary.  The results are posted here and in my previous post.  I went for 20s/30s silver screen glam combined with some of my hobbies and interest- bollywood, bellydancing. And of course, the opportunity to showcase the beautiful art on my body.  I know I never would have had the confidence to even THINK of doing something like this, and the shoot was fantastically fun, and the results, amazing.  
In a way, I'm sad that I've not had the time to spend on my blog since I went back to work in July, but I suppose that is to be expected--life gets in the way.  On the other hand----LIFE---- that is what I was fighting for this whole time.


Thursday, December 6, 2012

Goodbye to you.....

My new Hanuman Tattoo!
Monday am was my last 'regular' oncologist appt.  I go from every 3 weeks to 3 months for now!

Tomorrow am I'm getting my port out.  I'm so excited, I thought this day would never come.  I'm DONE with IV chemo.

41/2 more years on Tamoxifen, but that has not been the nightmare that I've heard others tell about.

I'm feeling pretty good, trying to fit in a run here and there, and bellydancing on the weekend.  I'm hooked on Bollywood music to get me moving in the morning.

Borg Port in
My only lasting side effects are mild neuropathy in my fingers and toes, for which I take Neurontin for, and a new stiffness in my joints that started when I started the Herceptin.  I've tried to remove all other variables- running, tamoxifen, upping my frequency of Enbrel, and I still have achey feet, ankles and hips if I sit or lay down for too long.  I'm hoping maybe it will end up being the Herceptin, so I'm going to be looking to see if my symptoms improve.

Tomorrow...I'll have a photo of BORG PORT OUT!

Friday, October 12, 2012


Just got back from the doctor and on top of the bladder infection I'm treating right now, I just found out I have shingles! Ugh. Off to the pharmacy for yet ANOTHER prescription.

On the positive front- only 2 more IV Herceptin treatments. Then I can be un-Borged, just not sure when.

Cudos to my neighbor who nailed the shingles diagnosis while we were working on our bra design for "Bras Across the Grand" on October 20th at ah-Nan-Awen park.

Friday, September 28, 2012

I'm still here

It's amazing how fast your blog gets neglected once you are back into the swing of things.  I went back to work in the middle of July and here it is almost October and no posts!
Important things that happened since my last post:

My oldest step-daughter started college !!!
My sophomore step-daughter made varsity volleyball!
My son started middle school and joined the local select soccer league which means practice, practice, practice!

I ran 2 5K's - the Pink Arrow Quiver in 41:19 and the Susan G Komen West Michigan Race for the Cure in 35.48!

My hubs bought me a banner to commemorate my cancer journey and it hung on Main Street for 2 months.

I started taking bellydance classes and also dropped in on some bollywood dance classes (SOO much fun!)

My hubs and I decided to take the intensive 3 month Yoga teacher training in Lansing starting in January.  I am planning on becoming a certified yoga intructor.

I got two baby angora bunnies in March , one of which passed away suddenly last month at 6 months old, and then got another 5 month old chocolate colored English/French angora cross who is gynormous!

I have bleached my hair (which is growing in curly)  platinum blonde and also pink on two different occasions

I have spoken to 1200 High School students about Cancer and what our Pink Arrow Pride program means to me.

I've gotten 2 more survivor bracelet on my left wrist and a 1/4 sleeve of Hanuman, the hindu monkey diety on my right arm!  I'm just waiting for the color.  Life is too short to not do what we want to do!

And I've been continuing to go to Herceptin chemo every 3 weeks until November when I'll be able to get my port out!!!

All this and working full time, too.

I realize I need to really keep up on the blog.
I don't want people thinking that once you are done with chemo, you are done with life, or cancer either!

I'm still here, living my life, albeit with a lot more attention to doing what makes me happy, not letting my job get to me too much and appreciating all the support and love that I still get from the important people in my life.

Hopefully, it will not be another 3 months before I post again!

until then~  "Seek Peace, then pursue it!" (from psalms 34: something._


I was hoping to add pictures to correspond to all the events I mentioned in this post, but I realized that day would never come.  I'll try to add a few into upcoming blogs so that these past few months don't just fade away.  ~ P (still badass!)

Relay for Life

I wrote this post in June and never got around to getting it published.  It's amazing how fast a year streaked by and things you thought would never arrive have come and gone.

In June, I participated in Relay for Life at Lowell High School.  I've never done a relay event before, and this year I was signed up under two teams.  My friends and family team- honoring my girl Melissa - who also is one of the organizers for the event -  her dad, my friend's mom and several other people.  Carol, our head coordinator from my Gilda's Club Survivors group, finagled me into joining their team as well.

I had 4 different shirts, but each one had a picture of my girl Victoria, who was and still is battling stage 4 colorectal cancer.

I ended up walking 17 miles in 20 hours and Brian walked 20 hours, he figures around over 50 miles in that time. While we were tired and sore at the end of it, the event raised over $62,000!  I'm really looking forward to next year, and will probably sign up to be a 12 hour walker, now that I know how things work.

Connor was the lucky one to get the honorary dunking prior to the survivor ceremony.  My friend, Tracey McDonald ended up speaking last minute at the Survivor ceremony, and additionally gave me my inspiration for my survivor bracelet tattoo! After that, we did a Survivor Lap and I got to spend some time with one of my numerous friends I met through this experience -  my friend Krystine, who is not only the grandma to my GF's son, but also turned out to be a BC survivor and my nurse on the dayshift when I had my mastectomy!

Here is Tracey's speech, it is really moving, get a coupla kleenex now!  2012 Lowell Relay for Life Survivor Ceremony Speech

 I was honored to be asked to speak at the Luminaria ceremony.  People decorate white lunch bags in honor or memory of cancer survivors and then around sundown, they surround the track and light candles in them. Then we do a lap in silence to honor them.

Here is the speech I gave: 2012 Lowell Relay for Life Luminaria speech

I stuck to my new tradition of adding some 'bling' to my hair to commemorate special occasions.  I still didn't have too much hair to do anything with, but I managed to find some to dye purple for the occasion.  The cool thing about that, as I found out, is that complete strangers recognized me after my speech and came over to talk to me

In the end I walked 17 1/4 miles over a 20 hour period, stayed up all night, learned the cupid shuffle AND performed it twice, did sunrise yoga at 7 or 8 in the morning and had a total blast!  I'm really looking forward to next year!

-----> The Cupid Shuffle ------> learn it and come out and dance with us next year!

The Luminaria bag my hubs made for me
all my family on the front and lots of
friends names on the back

Wednesday, June 13, 2012

Bad Dog School

Last year, before I was diagnosed with breast cancer, I decided that I wanted to get more involved with my dog, Max.  We had to euthanize our other dog, Roxie, due to cancer, and Max had gotten a little crazy around the house, marking on weird things,  and generally exhibiting signs of missing his buddy. I had never taken the time to really pursue any training with my dogs other than the basics, sit, stay, down, come (sometimes), off, off the bed, etc. Roxie had spent 1/2 of her first 14 months in the world in a no kill animal shelter and was a little crazy about food and treats. Crazy like "I can't do anything but run around in circles and drool".

Max on his Roxie pillow
We believe Max was a 'drop off' dog, found wandering around Lowell with a Chocolate Lab and a collar.  No one claimed him.  He is a border collie/springer spaniel mixed with who knows what else, but the instant we saw each other it was love at first sight. Border Collies have to be one of my all time favorite dog, but I was adamant about not wanting one while we lived in town, without anything for a border collie to herd or do. I  read articles on the internet about the destruction bored border collies could wreak on a house. Yet, here I was bringing one into my own home, helpless to prevent it. Although he surprised me by being a lot less energetic in the house than I expected, when we left him alone during the day, he took the opportunity to rid my house of rugs, pillow stuffing, 100 year old oak floor molding and a few pieces of the wooden back stairs.  Max had separation anxiety.  Even with Roxie around.  After relating to my fellow co-workers the latest caper that Max had gotten into, they would laugh, shake their head and say...."and you wonder why he got dropped off....?"  Unfortunately, my son and I discovered his superpower was unbearable cuteness, and we continued to go rug free, patched up the stairs, and moved the dogs to a less damageable area on the 2nd floor landing with only 20 year old cheap wood molding.

Happily, Max and Roxie got along with each other, and when I took them to our new dog park, they both had a great time chasing around with all the other dogs.  A couple of years went by and one day at the dog park he decided to lunge at a cute little golden retriever puppy there.  I was really shocked and surprised, he had never done that before!  The next time I took him, he got into it with some Old English Sheepdogs about twice his size before the owner could step in and separate them.  Eventually I stopped taking him to the dog park because he would get into it with any dog that came near us.  Brian thought maybe he was protecting me, but I didn't know what was going on.  Additionally, he started having panic attacks during rainstorms and thunderstorms.  We always know when a weather front is rolling through because Max starts panting, drooling and shaking.
Sweet Max
When we had to put Roxie down, he seemed to get a little worse, but fortunately, Brian started a new job working at home so that Max wasn't alone all day long.  I decided that since Max was equally motivated by love AND food, I wanted to start working with training him to do a few more things besides the basics.  When we first got him I took him to basic obedience and he aced that. I signed him up for advanced obedience, though now with trepidation....what would he do around the other dogs?  In his house and yard, or around friends he was the sweetest dog, but as soon as another dog, small child or even unfamiliar adult would approach him suddenly he turned into Cujo!

After speaking with the owner of the training center, she thought that it would be ok to bring him, and we would just keep an eye on him.  He did really well, as long as no other dogs got too close to him.  Then he would put on his Cujo show.  We could reduce the tendency by putting benches in between him and the other dog, but at least once a class he would bring out his Cujo impersonation.

None the less, we ended up passing the Canine Good Citizen test at the end of the class, with the exception of the test of being left alone for 3 minutes out of sight of me.

The owner suggested that in the spring, he would be a good candidate for Rally, a competitive obedience sport, ON-leash, where dogs and owners run a course filled with obstacles like, sit, down and stay, turn in a circle, figure eights between cones, etc. all while heeling on a leash with their handler.  We signed up for it and had a great time.  Max did really well with the obstacles but still managed to pull a few Cujo's out each class.  In the middle of all this, I was diagnosed with breast cancer.  I missed the class the night I found out, but we managed to finish the class.

Max was definitely my cancer/chemo buddy, he was always there if I needed a snuggle partner. When I had the energy I worked with him on small tricks, my favorite one being "Wipe your Feet" when coming in from the winter rains and brief snows that we had.  I had already taught him to shake with both front paws, so I just added a sit on the mat at the door, and a back feet command to wipe all the mud, snow or whatever out of his furry little webbed toes. I also taught him to spin in circles and rollover, as well as relax, which HE actually taught me, and I went with it and made it a real rewardable trick for him to do.

Once my chemo was over, I started thinking about taking him back for some more training.  I didn't feel comfortable with going to the intermediate Rally class, so we signed up to do the Intro to Rally again.  This time, the class was held in the outdoor arena versus the indoor metal pole barn where we had taken all our classes before.

The outdoor training arena is WAAAAY more interesting and distracting than the indoor one, all sorts of outdoor smells, and countless dogs that had trained there before.  Additionally, they split the course in 1/2 to combine two different classes, our Rally class on the entrance side, and an Agility class on the far side of the arena, separated by a snow fence.  Max, true to form, had his little tantrums with each of the dogs in our class, luckily, only about 4 at any one time.  Unfortunately, he also had about 8 other strange dogs on the OTHER side of him that would cross back and forth in front of him periodically.  The last two weeks of the class, he had managed to drag me across the grass twice, and pulled the leash completely out of my hand, to get into it with a bigger border collie.  We had one class to go--the final exam as it were-- where we wouldn't have any instruction, just run a few courses for a score, just like a real Rally competition.  I got an email a few days before from the owner of the facility telling me that she and the trainer thought that Max's behavior was escalating and that he probably shouldn't come back in for the final class, due to safety reasons.  I was crushed, one, because I'm madly in love with my dog, but two because I had no idea what or why he acted the way he acted.  They recommended I see a behaviorist in town, who runs Reactive Dog classes, before he returned for any more classes at the facility.

I contacted Christine, who I had met with before, and she told me that she didn't have any classes running at time, but would be willing to work with me either privately or semi privately.  So I agreed, and we turned up at her house 2 weeks ago for "Bad Dog School".  Of course, since there were no dogs around, he was the perfect gentleman, sweet, doting, only slightly shell shocked when I put his Halti head halter on and took him for a walk. She gave us homework, a book for me to read and a recommendation for a product called 'composure', which is an all natural herbal supplement that helps anxious dogs.

I read through the book, practiced our exercises--go to place, and walking on a head halter-- even teaching Max a new trick..."is your nose itchy? scratch it" (it's adorable).  Tomorrow is our next appointment, and I think that there will be at least one other dog there.  I'm a little nervous how it's going to turn out.  I plan to stop off at the store beforehand for a canister of squeeze cheez bacon flavor to really motivate Max.  I hope it works.  I guess we will have to wait and see!

Sunday, June 3, 2012

The return of Pixie Bad-Ass

TMI Alert: This blog contains content that may not be suitable for uptight viewers or children.

It's amazing what a cut and color can do to your spirit and attitude.The fact that I have enough hair now to allow a cut and color is also a spirit raiser. This is what I looked like last week after going to my oldest step-daughter's graduation honor ceremony. She is graduating Summa Cum Laude, also a member of NHS and plans to study Pre-law at Lake Forest University in Chicago. I'm so proud of her.  We've had our rocky relationship, but she has a good head on shoulders and I KNOW she likes to argue about everything so she might make a great litigator!  

Anyway, since I was all made up I thought I'd get a shot in of my ever thickening hair.  I love the style, it's so easy, and I feel chic when I'm all gussied up, but there was just a little TOO much salt in the pepper for my peace of mind.  So after consulting with my Oncology team (stylist's orders) I was in this past Wednesday for a "DO" over. And Voila! I suddenly have sass and attitude.  My stylist even managed a mini mohawk!
I was totally geeked.  In three weeks I will participate in the Lowell Relay for Life for the American Cancer Society.  I am planning on adding some purple somewhere on my head, I'm just not sure where. I need to get some pre-natal vitamins to get the hair and the nails growing back again.
I've been keeping my nails short and painted just because they look so horrible, but most are starting to look more normal.  I have a few that are probably going to need a few more months before they are back to normal.  My toenails, also have interesting white stripes across them, and my big toes the nail lifts all the way back to almost the middle of the nail.  I'm keeping THOSE painted as well....right now in "Troublemaker" Purple in honor of my girl Victoria, who is recovering from the first of her surgeries for stage 4 colorectal cancer.
She and her hubs went on an adventure vacation in between her chemo/rads and her surgery out to the Appalachians, and caught this lovely picture of her faerie sprite personality that portrays her perfectly.  Just add Glitter and fairy wings for the whole deal.

I haven't been writing as much because I've been doing a TON of things, and also NOT a ton of things due to my finally having my 2nd boob surgery, which is my last- Hopefully for awhile.  The surgery went well, I was on restricted activity for 4 weeks!  Almost killed me...but I got pretty adept at watching past episodes of Deadliest Catch on Netflix and also painting my son's Warhammer miniatures.....more on that in another post!.  Anyway. Here is the outcome the first day after surgery. As you can see, I'm symmetrical again....mostly...the difference being that the right one bounces and the left one....doesn't.  In this photo even though I'm trying not to flex my pectoral muscles, you can see a little of the wrinkling on the roboboob. That will never go away, thought I'm hoping that once I get the tattoo on it, it won't be as noticeable  The date for the girls inked-out rockin' roadtrip has been set for the weekend before the 4th of July.  I'm REALLY wishing it to come sooner, but then again, I told my boss that I thought I'd be coming back to work the middle of July, so the time remaining is bittersweet.

I've been doing so much more, but I think I will postpone the updates for another time, the baby bunnies I got the week I had my surgery, why my dog Max got kicked out of Rally class for being naughty and the potential of my son's Bretonian warhammer army may be completed before I go back to work.

And journey goes on......

Thursday, April 5, 2012

From the pen of Bilbo Baggins....

"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating and even gruesome, may make a good tale, and take a deal of telling anyway."

I read that line and it fits absolutely these past 10 months of my life.  Lots of posts when I was feeling horrible and uncomfortable and gruesome.  Now, things are looking up a bit, though I am still off work on long term disability, waiting for my (hopefully) last surgery, and I feel like the pickings are slim for blog posts.

Obviously, I'm reading "The Hobbit" right now.  I re-read the Lord of the Rings triology last month, and then followed it up with "The Hunger Games" trilogy.  That was a bit of mistake.  I loved the books, but I sobbed for hours after every single one of them.  Is it the mother in me that related to the atrocities done to the children in the book? or was Katniss's pain and mental anguish a little too close to times I remember all too well, when I WISH I had someone to put a morphling drip in my arm and I could just remain in oblivion until the horror was over?  

Sooo....on to a little lighter reading.  I haven't read the Hobbit since college and so I thought I would immerse myself in an exciting and adventuresome tale that didn't hold as many emotional stakes for me.

Additionally, a good friend and former coworker at a local publisher brought me some books to look through. They're from their semi-annual book sale where they get rid of all the prelims that they send out before the book hits the stands.  One of the books was "Invincible- The Chronicles of Nick".  Unfortunately, the 2nd book in the series.  So I went and checked out the first, and read both and am now awaiting the third from the library.  I like pre-reading books that might interest my now 11 (gasp) year old son.  This is Percy Jackson-esque but with Vampires, Were-bears and Zombies.  I thought he might like them, but he is firmly entrenched in the Harry Potter series.  Right now, he's on Order of the Phoenix and loving every page.   I'm so glad that he has finally found the passion for reading that both my husband and I have.  I also discovered the author-Sherrilyn Kenyon wrote about a gazillion other books for youth AND adult.  So I have a 700 page novel about an 11 thousand year old immortal waiting on my bedside table.  

I picked up two other books by chance while at the library, the one I'm reading currently is called "What Should I Do with My Life?" by Po Bronson.  Since I pretty much ask that question to myself everyday but never get an answer I thought I would check it out.  It's an interesting read, but not helping me get closer to MY elusive answer to that question.  But it does support this ennui, or this anxiety I have about returning to my former job.  The practical side says go back and get the paycheck and the annual bonus....and be miserable every single day....again.  The book is full of people who feel/felt the same thing.....that THIS can't be the thing I'm meant to be doing with my life.

Yesterday, I stopped by a local artist shop in my small downtown town, practically a neighbor, one of the few original older shops on MY side of the river.  It used to be a yarn store a few years ago and I was insanely jealous of someone who could open a yarn store in such an awesome brick, leaded glass doors, 100-year old wood floors, 20 ft plus ceilings, a dream. The yarn store went out of business after about a year and then I found out that the owner just didn't really want to be in retail.  They tried renting it, without success, and now she has a creative glass and polymer clay shop in that space. Her work is AWESOME. They have an online store -CreArtive customized glass and clay art -but figured that they could just as easily put their product in the shop since it was empty.  I talked to her about her willingness to perhaps co-opt part of the store for a yarn shop?  She said she had thought of it and was amenable to it, but was waiting on someone trying to get a business loan.  We got along so well it was almost scary.  I'm terrified of what the answer will be either way.  This is a dream of mine, but I'm scared to death to take that leap of faith that starting up a business takes.  But, in the spirit of boldness that I had when I first started on this journey that I did not choose, I at least took the first step.  Who knows where that will lead?  I know at least that I will visit her again, and maybe gain a new friend and/or mentor, so I'm glad I stopped in to meet her.

On to CANCER related things, since I guess that is what THIS blog is about, I am FINALLY growing some respectable hair and eyebrows, though the eyelashes are still lacking their former glory. My hair looks a bit sparse in the photo, but it's actually quite a bit thicker in person. I've gone out a few times now in all my glory, it feels so good to be out in public without being the only one wearing a winter hat indoors!  And of course, as you can see it's obviously coming in blonde, so I won't have to spend so much on hair color when I actually have enough hair to color. ha ha.  I was despairing about my eyebrows, since my girl K in ME had full hair, eyebrows and luscious eyelashes by week 12 and I mistakenly counted end of March as 12 week PFC (Post- EFFing Chemo), but it's actually closer to 8, so I still have a month to go. 

I've been on my tamoxifen for almost a full month now, and I've noticed a few side effects, but nothing like those few horrid weeks during chemo when my Ovaries totally shut down the Estrogen.  (also known as the crazy period of this journey).  I've been feeling slightly depressed, but then again, I'm reading about children killing children, at home by myself most of the time and Estrogen deprived.  I figured I could curl up in a fetal position until my LTD ran out and kicked me back to work or I could take charge of my life and go to the gym.  I started running- something that I told my hubby I would NEVER do.  I'm on my third week of week one of the NHS couch potato to 5k in 10 weeks podcast on my iPhone.  I think I may be able to try week 2 next week.  My goal is to be ready to run the 5K Susan G. Komen Race for the Cure in September.  Last year, I had just started chemo, and I could barely make it around the 1 mile community walk.  I'm frustrated because I'm underfit.  I've been doing yoga through this whole thing, in some form or another, but no cardio- my nemesis.  So now whenever I feel that blue feeling pulling me back to bed, I grab my gym bag and go to the gym and work out for 30 minutes...either running, or on my off days, elliptical, treadmill or recumbent bicycle.

I'm also dedicating my fundraising energy this year to the ACS Relay for Life this June in Lowell.  I've raised over $300 so far for my friends and family team, and I'm also on the Gilda's club team, so I'll have to walk twice as much since I'm participating on two teams.

I'm dedicating my walk as well as purchased a Luminaria for my girl Victoria, who is currently fighting Stage 4 Colorectal Cancer with lung metastasis at age 39..  She is handling it so well that it gives me inspiration when the small annoyances get to me.  Her doctor's can't even give her a prognosis until they see how well she is responding to her treatment.  She described it to me, and I was horrified and so grateful to feel like I got off easy.  Now, I've just read that one of my followers, and fellow blogger- Lena- has been diagnosed with stage 3 colorectal cancer, not even 1 year after her initial Breast Cancer diagnosis.   It made me so mad and sad to read her post, that I'm going to need to purchase another luminaria in support of her.  

The strangest thing is that I went to knowing 2 people who have had cancer in my large group of acquaintances, to knowing WAY WAY too many. I could raise my $100 goal just buying luminarias for all the people I've met battling cancer or who have lost the batttle.   This is one reason why I chose to do the American Cancer Society's Relay as my main fundraiser.  

Here is my Relay for Life webpage, if you'd like to contribute to the cause, or buy a luminaria in honor, memory or support of someone with Cancer. If you sign up online, you can have a message printed on the bag.  They line the high school track with them, and light them at nightfall.  I've never done this before, but I think it's going to be pretty overwhelming.

I guess Bilbo was right.....the uncomfortable and gruesome do take some time in the telling.

Until next time- om shanti

Wednesday, March 28, 2012

"Awwww....Freak out!"

Last week I had my first official post cancer freak out.  I had a sore spot on my shoulder blade that had been bothering me for a week or so.   I have been going to the gym to try and work on getting my stamina up, so my first thought is that one of my workout tops rubbed it the wrong way.  Then the seat belt was aggravating it.  Finally, I was feeling around for the sore spot and BAM...there it is.....a lump under my collar bone.  I'm thinking to myself....this is NOT happening to me again.

So different from my first reaction to the lump on my breast.   This, after talking to my Rheumatologist about how I'm dosing myself with Enbrel as little as possible to control my symptoms.  I met a woman at yoga with RA who DID get lymphoma while taking Enbrel and Humera, so now it's officially on the table as something real that can happen to people, not just a black box warning on a sheet of paper from the pharmacist.  

So I spent  two days of thinking, there is no way that I can have a recurrence or a new tumor so close to stopping Chemo comes with the terror of remembering back to the day when a strange lump in my breast did nothing more than make me pause and think, I should probably have someone look at this at some point.

Rather than worry myself longer than I had to, I called my doctor to have her check it out. She tells me that it's feels like an enlarged lymph node, nothing to worry about, I probably have a little bit of something or other. But if it's still there in 2 weeks, I can get it biopsied for piece of mind.   I feel foolish. I don't want to spend the rest of my life freaking out about every little lump bump or illness that comes my way, but right now, I can't help it.  I worry that all this that I have been through and all that is still yet to come will not make any difference in the long run.

I think this is a normal reaction at this point.  After all, I just found out last night that the grieving process doesn't take place until 6-18 months AFTER the traumatic event.  Just about the time your friends and family think that the ordeal is mostly over and we all can return to a normal existence.  I feel nowhere close to normal at this point.
This is me almost exactly one year ago, when we took Connor to Chicago to celebrate his 10th birthday.  I know I will never be this person again.

Here is the hair update: Still no eyebrows or eyelashes, but I've gone out in public the past two nights without wearing a hat or scarf on my head, but a lot of eye makeup.  I'm still dealing with the neuropathy in my finger tips and toes from the last session of Taxotere in February.  I won't know if it will ever go away. At this point, I just have to wait and see, and bear it if it doesn't.  The good news is that I didn't lose my nails or my toenails. My finger nails look horrid, but they aren't lifting up or anything, they are just discolored and funky looking.  I ended up putting on nail polish and keep cutting them down in hopes of getting them looking back to normal as soon as possible.

chemo nails

It's a month since my boob 2.0 upgrade, and the real implant is more comfortable than the football they had in there before, but not as much as I had hoped.  I still get phantom pain where there is nothing to hurt and I feel like I am now smuggling a water balloon in my chest.   I know that I will eventually get used to this feeling, too.  Humans are so wonderfully adaptable, but I don't know if I will ever be happy about it.  It doesn't look real, it doesn't feel real, and I seriously question myself sometimes for ever going thru with it in the first place, rather than just cutting it off and being done with it.  No one prepared me for what it would be like to have a part of myself cut off, even though they can reproduce something that looks normal as long as I have clothes on.   I see my boob doctor next on April 9th and I hope that I can get a date for the breast lift for the right side, so I can put these surgeries behind me and get on with it.  

I just don't know what "IT" is at the moment.

Thursday, March 8, 2012


(TMI alert - viewer discretion advised)
It's been two weeks since my tissue expander (aka the toaster, football, aggravating nuisance, etc) was removed and my "permanent" implant was put in.  I use quotes because the implant is NOT permanent, it has a shelf life of about 10 or 15 years, when it will need to be replaced, or if I gain a lot of weight or if I decide I want to start another life in the porn industry. I saw my plastic surgeon today, hoping (on my part) to be able to schedule the surgery to get my right boob lift scheduled.  Instead, I got, "looks like it's healing well". And also his recommendation that I don't get the nipple graft- he doesn't think it will be successful.  So at least there is one decision that I no longer have to make.  I wait a month and then see him again, and hopefully be able to schedule my last surgery.  

For my part, I'm still ambivalent about this Barbie boob.  It's certainly not the rocking rack that I envisioned when I first learned I was getting my mastectomy.  Right now it looks like frankenstein with a barbie boob.
I know the scar will heal nicely, when I went in for the surgery, the incision was already a fine white line, so I won't have angry red scars for ever.  I think once I have the lift on the right side and all is healed, I may feel differently.  There are so many stages to the process of healing and at times I get a little impatient.

So here is the progress so far, the weird ripple above the tape is actually my pectoral muscle.  I can actually flex the top part of my boob if I want to, so I guess that can be the super power I gained from this whole experience.  However, I will always and forever only be "cold" on my right side. unless I want to carry peas or wadded up tissue to stick into my bra to have matching THOs.  On that thought, that might be my million dollar idea....stick on nipples for woman who have mastectomies without the nipple graft. I'm wondering if I do a google search what I would find....

In any event, the number one fave tattoo is now still in the running, since there will be no nub to worry about.

I'm continuing on my Herceptin drip every three weeks, my most recent visit was this past Monday and my Oncologist called in my prescription for the devil drug- Tamoxifen.  I will totally laugh and do something to benefit the greater good if it ends up that I get no adverse effects from this drug.  It's the Estrogen suppressant medication that I get to take for the next 5 years.  I haven't started taking it yet, so I'll keep everyone posted once I do. I figure I already went through "menopause in a minute" during my first set of chemo, so I'm not sure what other side effects I can add to the ones I've already been having.  

I had my third muggle (MUGA) scan last week, and according to my doctor my heart is still chugging along fine despite my Oncologist's attempts to destroy it.  :)    

In other news, I did NOT lose my fingernails or toenails, though they have really interesting colors and stripes.  I painted over them and called it good.  I did end up getting neuropathy in that last darned chemo session of Taxotere.  It's not horrible; somedays are worse than others, and trying to button small things is an interesting challenge.  I'm taking Neurontin for it right now, and have been told that it will take some time before it either goes away or doesn't.  So.....another unsolved mystery to ponder over.

On the top side, I AM getting hair, but not much yet on the very top. It's like male pattern baldness in reverse. I still don't have many eyebrows or eyelashes to speak of, but my girl out in Maine told me she had hers by week 8, so I'm keeping my fingers crossed for the end of March to start looking a little less martian like.   

My weight has recovered nicely, I no longer look like the walking dead, but I have become a bit alarmed at how quickly I was able to get back up to my prior weight.  I guess the days of sitting around and eating ice cream twice a day are over for me.

In that spirit (and also cuz I just bought 3 pair of jeans that I would like to continue to be able to wear for a while), I upped my exercise, and was faithfully practicing my more challenging yoga videos and going to class until the day before my boob surgery.

Two weeks later, still a bit sore,  I decided that I needed to do something that didn't involve that body part.  So I decided that I would begin running.  This is a totally new experience for me.  I'm using the NHS couch potato to 5K in 10 weeks podcast that my husband downloaded.  I started on Tuesday.  On Wednesday, I went to Gazelle sports to buy real running shoes because the ones I had were NOT cutting it.  So now, I feel like a REAL athlete.  I'm not sure why running should make me feel so much different than my yoga practice, maybe because I think of yoga as more of a spiritual thing for me and running is so completely different than the yoga I practice.  I have not yet experienced the "runner's high", at this point all I've experienced is the 'runner's nap' after.  I know it is because I'm still recovering on so many levels, but still, I'm quite proud of myself for starting up something I told my hubby I would NEVER do.  He's already pulling out the 5k races that are in the time frame when I'd theoretically be able to run them.

We'll see how that goes.

for now.....peace~ namaste

Sunday, February 19, 2012

Boob 2.0

or..... "The great nipple debate"

"Should I give up or should I just keep chasing pavement...Even if it leads nowhere?" ~Adele

Yes, I am in love with Adele.  I've had here in one of my Pandora stations for months, not really realizing that she was a relatively new artist on the scene.  I will continue to be in love with her even now that she is a big thing.

I get my new boob in three days.  The days seem to be dragging.  I'm excited to get the tissue expander out, and to start to get to know this newest member of my body.  I'm not sure if I will continue to feel this way after the surgery, but right now, it seems that even tho I will have two visible breasts on my body, I will always and ever only have one breast left.  Maybe it's just the obvious foreignness of the tissue expander that makes me feel this way, but, even after the implant goes in, I will still have no feeling on that side...left side is just for your viewing pleasure.   To that end I've been struggling with what to do with it once it's in place.   There is an astounding number of options that I'm faced with:

1. implant, only.  Your basic Barbie boob, with a ginormous scar across the front.
2. implant plus nipple nub.  Depending on where they get the skin graft from, the nub is either skin colored or not. Up to this point I have been afraid to ask what my options are for skin graft options.
3. implant plus nipple nub plus tattooed color to match the other nipple.  This would be the 'matching set' option.
4. implant, no nub, just a tattoo that gives the "trompe d'oeil" effect of having a nipple, only it never gets cold.
5. any of the above 4 options plus a kick ass tattoo that would make it REALLY something to look at.

This is my favorite for a variety of reasons:

It's the sign of "OM" in the middle of a lotus blossom.
According to, "Om, according to the ancient scripts of the Vedic civilization, is the sound of life. It is the infinite vibration that shimmers through the Universe, providing life and sustenance to everything. Om is the beginning and will continue till the end; the one constant that unites all of creation at its deepest level."

According to eastern beliefs Lotus bloom symbolizes rebirth. In Buddhism, it is the most essential symbol for spirituality and art.White lotus signifies the state of spiritual perfection; red lotus is related to the purity of the heart and can have the meaning of love and passion. The pink lotus is the perfect of all and stands for the deity, when the blue lotus symbolizes the wisdom of knowledge.

The lotus also denotes truth and enlightenment, especially to those of the Buddhist faith. In a lot of ways, it expresses the quest for truth and enlightenment amongst the darkness and struggles of life. 
(excerpted from a blog at

My 2nd fave:
(above the nipple and then swing the stem around it)

So......Here is the next dilemma I face.  I have a few weeks to decide, they will do the nipple procedure when I get the right breast upgraded.  Feel free to leave your comment and opinion!

om shanti om.

Saturday, February 4, 2012

"Sometimes I think that I'm breaking down...."

"and other times I think that I'm fine
But something got into my engine
It slowed me down
Now I gotta turn this whole thing around."
~Poe "Dolphin"

The worst of my chemo is finally over.  I'm done.  I feel like I should be relieved, but the truth is that I still have 10 more months of IV therapy with Herceptin, which will hopefully keep the aggressive, invasive, recurring thing that I have in my body in check.  In a few more weeks I'll add Tamoxifen, and expect to go into full menopause for the next 5 years, something I have already experienced through the first round of chemo drugs that I received.

On Feb 22, I'll be getting the roboboob out and replaced with the 'permanent' one.  I use "" because, the implants only last 10-15 years, so I can expect to need tune-ups from time to time, or if I gain a lot of weight I'll need to redo it to even out.  So even though I can hype it up that I'm done with chemo, which is of course a big deal, it by no means means I'm done with dealing with this cancer. My hair is starting to grow back on the sides and in the back, on top though, so I still can't get away with not wearing a hat when I go out in public.  I can't really tell what it will end up looking like, I don't really care, I'd just like to start looking a little more normal again.  I'm down to about 4 eyebrows on each side, and still just little tiny eyelashes that do nothing to protect my eyes-they are constantly watering.

I have a date with my oncologist on Valentines day- that is my first treatment of Herceptin alone. I should be relatively quick...only about 30 minutes to infuse, plus the doctor visit, compared to 4-5 hours for the chemo before.

I've been working with my Long Term Disability company, I've been on it since January 1st and they provided me an attorney group to help me apply for Social Security Disability.  I'm not sure if I qualify or not, so we'll see what happens.  I had lunch with my supervisor and told her I thought end of April is a good point to think about my return to work.  Hopefully I will have enough hair by then to go to work without a hat.

I am in a strange place at the moment.  I've been feeling very tired and unmotivated these last few weeks, after a flurry of activity which I thought would carry on.  But the motivation wound down some, and now I'm back to feeling that little edgy panic in the back of my brain whenever I think about returning to the world of the living.  Just like I couldn't imagine what chemo would be like, I can't seem to imagine me back into my old life, doing the same things I did before I was diagnosed.   A lot of it just seems pointless.

I really thought that I would have had an epiphany before now, something that would change my life for the better, but all that's happened is that I've had 2 dear friends having to deal with horrible health challenges, and now it's MY turn to feel helpless and sad that I can't do anything to make things better for them..

I haven't really felt the motivation to write lately, I've been listening to a lot of music and knitting.  I also went through the whole Harry Potter series, AGAIN.  But they are safe for me to read, and now my son and hubs are also reading the series for the very first time.  This is fun for me as they tell me where they are and how different from the movies they are.

I've been slacking on my practice as well, limited to a few forward bends and leg stretches to undo the hours of sitting and knitting, plus back and chest stretches to keep my roboboob from turning me into the hunchback of Notre Dame.

I realize now is the time for me to start living again, use my limited remaining time off for personal improvement- gym, yoga whatever, but I haven't had the impetus to start it.

I know I'll get through this, I'm hoping the reconstruction surgery will trigger something in me to get my life back together, because right now it seems to be unraveling a bit.  However, endeavor on I must, what other choice to I have?

Friday, January 20, 2012

"It makes sense that it should feel this way...

"It makes sense that it should feel just this way
That you slowly fade and yet still remain
As if to say: Everything matters in such an invisible way
As if to say: It's O.K.
Fly...away"  Poe

I haven't been around much lately.  The upside to feeling better.  There hasn't been too many interesting things to report. Christmas and New Years went by and wasn't too overly stressful.  The weather's been a bit weird for MI. Just this week we started getting some snow.  I'm not complaining.

Connor broke his thumb right Christmas break,  greenstick fracture, caused by getting hit by a hockey stick in gym.  He just got it off this week, on Tuesday, the same day we commemorated the passing of our dog, Roxie, one year ago.  She had cancer, too.  Trying to explain to your 10 year old that just because we put the dog to sleep because of her cancer didn't mean the same treatment plan for Mom.

I did a lot of knitting before xmas and I think even more after-   Hat for my sis-in-law in charcoal and raspberry Alpaca/acrylic blend.  The Chilly Podster mitten for my sis- that was challenging but I think I need to make myself a pair, they are very warm and useful!

After Christmas knitting was done, I started on stuff for me.   I made a couple of Hair hats for me- when I'm feeling the need to have a little extra flair.
Both using Lion Brand homespun, one in brown with all colors, blues, pinks, greens, and one in tan, grey and white. Then I felt the need to buy some delicious Malabrigo Merino to make another one, but now that I have it, and have 2 hats, I'm not sure I want to make a 3rd hat the same or find some other fun project to use it for.  It's heavenly soft, my SIL's friend made me a bonnet in lavender Malabrigo and it's heavenly to wear around the house. I started on my sock stash until I can figure out what I want to do with it.

Next Monday is my last session of Chemo with Taxotere!  I'm very excited to be done with the cell destroyers, even though this round of chemo has been much gentler than the first round.  I still have 10 more months of IV Herceptin every 3 weeks, then the Tamoxifen, but my hair is already starting to grow back in on my head at least.  I have dark stuff in the back like when I first shaved it off, still nothing on the top...but I'm feeling encouraged that I may have something to work with maybe in a month or so.

I met with Dr. Booby, a few weeks ago, too, my last fill, and then I told him I was done- schedule the surgery, so I will be having my tissue expander removed and my new boob on Feb 22.  After that, we'll schedule the lift for the right boob and then I'll have to figure out if I want a fake nipple or a really cool tattoo on the robo boob.  I'm opting for the tattoo but I know I should wait to see how it looks.

Two semi-antique velvet wing chairs
and a table/lamp for the music room
Other than that, I've been doing some improvements around the house, small stuff, and Estate sale shopping, my dream come true, and got some truly beautiful pieces of furniture for the house at great prices.  Connor also requested that we update his room to a more mature theme, so I went fabric shopping and found some beautiful curtain material and then my mom threw me a king size sheet in the perfect tan color to use as a duvet cover.  I just need to free up the kitchen table so that I can start sewing.

I'm trying not to think what happens beyond that. It's all beyond my control at this point. So I am just focusing on enjoying my time off, feeling better every day, and getting through my surgeries. After that, who knows what will happen?
New Linens for Connor's room

my prize, a curvy front dresser, as the buffet
in our dining room