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Breathless May 9, 2017

Posted by Judy in Musings.
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A few weeks ago, I read a book called, “When Breath Becomes Air” by Paul Kalanithi.  It’s a story about a man who was diagnosed with lung cancer in his last year of residency to become a brain surgeon.  In the book, he talks a lot about making life decisions, and how being faced with your mortality changes how those decisions are made.  He was very focused on research, and when his cancer came back in his brain, he was faced with whether he wanted to start long-term research projects that wouldn’t see results for 20 years, or focus on projects with more immediate results.  I find myself in a very similar position.  I was faced with my mortality when I was first diagnosed with breast cancer 3 years ago, and by and large, had come to terms with my death.  This time around, I’m having to think in more practical terms:  what is really important to me and what do I want to accomplish in the next handful of years.  Prior to the upsetting of my apple cart, I had planned on returning to school to get my Masters in Music Education with teaching licensure so that I could be a choral music teacher at the high school level.  This program takes about 2 years to complete.  Now I’m thinking this may not be the best idea.  I don’t have the luxury of time, so do I really want to spend that time away from my family?  I’m still working through that.  Fortunately, I don’t have to make any solid decisions until August, so I’ll let that percolate in the background and allow the more pressing matters, getting treatment set up, to inhabit most of my consciousness.

As I sit this morning, contemplating the upcoming treatment and my conversation with the oncologist, I’m struggling with faith, or the seeming lack there of.  I still have faith and believe that The Master has a plan and that He is sustaining me.  And yet, I feel unsettled.  I am fearful.  Even though the doctor-approved message is “This is bad news but not terrible news”, I’m with my BFF in feeling like, how is this NOT terrible news?  I’m struggling with reconciling my feelings over being told that I have a handful of years, with faith that The Healer can heal me.  Does the fact that I’m fearful and bummed mean that I’m lacking faith?  Conversely, does thinking that I’ll live several more decades mean that I’m seeing things through rose-colored glasses and not being practical?  I don’t know.  I just don’t know.

My oncologist is great.  He’s so down-to-earth, practical, and scientific in his approach.  He came into the room saying, “So you got the terrible phone call on Friday and I’m imagining you had a difficult weekend.” and immediately launched into answering questions and showing me pictures of the PET scan.  We spent about 40 minutes talking, and lots of information was exchanged.  I’ve tried to organize the information, but be prepared, it’s a lot.

Step 1 is to have a bone biopsy.  Chances are really high that this is breast cancer that has metastasized and not a new cancer.  But, the doc wants to make sure he knows exactly what we are dealing with so that the treatment will be the correct one.

Step 2 is to shut down my ovaries.  This can be done either surgically, or chemically with a medication called Lupron.  I’m likely going to go with the chemical option as it has zero recovery time.

Step 3 is to start hormonal therapy.  Since the cancer is in more places than just my armpit, I won’t be having surgery as it doesn’t really make a difference to survival whether or not the lymph node tumors are removed.  No sense in doing a surgery, that requires recovery, if there is no benefit.  Instead, the plan is to use two different medications.  The first is called Faslodex, and it is used for post-menopausal women (which I will be once the Lupron does it’s job) that have estrogen receptor positive breast cancer that has stopped responding to previous hormonal therapy (Tamoxifen, in my case).  The second is a very new therapy, approved by the FDA in 2015 for use in treating postmenopausal women with hormone receptor positive, HER 2- breast cancer.  This medication interferes with the growth and spread of cancer cells.  While talking with the doctor’s nurse after the appointment, I was surprised to discover that this medication is actually oral chemo.  Surprised, because the doc had said I wouldn’t need chemo this time.  I’ve decided that what he meant by “chemo” was the intravenously infused version, and not the oral version.  While I’m glad that I won’t have to go in and do infusions, I am bummed that I’ll again have to deal with chemo side effects, which include:  nausea, vomiting, neuropathy, mouth sores, hair thinning/hair loss, fatigue, diarrhea.  I’m most bummed about the hair loss, as I’ve finally come to terms with dealing with my curly hair, which came back thicker, something that I didn’t think was possible.

Step 4 is to speak with a nutritionist to see how making changes in my diet can have a positive effect on eradicating the cancer.

Step 5 is not specifically set up by the doctor, but he is okay with it . . . alternative therapies.  I am considering two different supplements:  Immunocal (which works with glutathione in your body) and Artemisinin (which has been used in Chinese medicine).  I need to do some more reading about both of these, so if you know anything and can enlighten me, I’d be grateful for the information.

The final step has nothing to do with the doctor, it has everything to do with you all . . . . . . prayer.  In the next two weeks, we will be having a prayer service, likely at my house, and also an anointing service, which is, I think, a decidedly Adventist thing to do.  (It’s based on a passage from James, chapter 5 verses 14 and 15)  If you’d like to be involved in either of these services, let me know.  If you are not local, that’s okay, you can still pray for me and my family and we welcome the prayers.

So I guess that wasn’t as much info as I thought, but it’s still a lot to process and digest.  I’m hoping that I can have the bone biopsy done this week, because step 2 can’t take place until after the procedure as the doc doesn’t want to do anything to mess with the chemistry of my body prior to the biopsy.  Once that is done, it’s full sail ahead, and I’ll be hanging on for dear life!

Miniature Christmas Tree May 6, 2017

Posted by Judy in Musings.
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Having a PET scan is very similar to getting a CT scan or a bone scan.  The tech injects a radioactive isotope into your veins.  Said isotope moves through your body, and then a machine takes a bunch of pictures.  The difference with a PET scan is that the pictures provide a look at the cellular level while the other scans look at the larger internal structures.  They inject a substance called FDG, fluorodeoxyglucose, which is a simple sugar chased down with a bit of radioactive material.  The idea is that cells need sugar in order to reproduce.  Cancer cells are greedy, and as such will gobble up sugar when it’s available.  So the isotope and the sugar circulate through the body, then the pictures are taken.  By some magic that I don’t quite understand, the end result is a set of images.  Areas that are dark are presumed cancer free.  The bright areas are those that light up because the sugar and isotope have been gobbled up by cancer cells.  So that’s your crash course on PET scans.  Now, on to my experience and results.

My veins are a train wreck thanks to chemo, so I always warn people that my veins like to behave badly, they roll and they blow.  This time was no different.  The vein she chose rolled and then blew.  She tried again on my forearm and had success.  Once she injected the goods, I sat around and watched “Love it or List it” for an hour while the sugar/isotope circulated through my body.  Once in the scanner, I had to lay still and got sooo bored.   So I sang a song that happens to be DD’s favorite:

My God is so big,

so strong and so mighty,

there’s nothing my God cannot do.

The mountains are His,

the rivers are His,

the stars are His handiwork, too.

 

Then I thought about a text message that my aunt had sent me last night saying that for some unexplicable reason, once you lay down on the scanner, you feel peace.  And you know what, I did.  I just knew that regardless of the results, I would be at peace.

Then I started getting ancy, so I started counting specks on the ceiling, and the holes in the machine, and anything else that I could see without moving my head.  They really need to have better things for patients to look at, like a little slideshow on the ceiling would be great!

Anyway, so fast forward to 5pm when I called the nurse and got the results of the scan.  She led by saying that she unfortunately didn’t have good news.  Then she went on to tell me that there’s disease in both of my axillary areas, in my right humerus bone, in my thoracic spine (mid-back, which I think explains why my fall over a month ago was so painful), and in my right groin.  She said the next step is to get a biopsy of one of the bony areas to see if this is a new cancer or if it’s the previous cancer metastasized.

This is not the result we were hoping for.  Evenso, I’m feeling very calm about the whole situation.  The nurse was even surprised at how well I was taking the news.  Honestly, I’m kind of surprised, myself.  As I’ve been thinking about it for the past 6 hours, I’ve come to the conclusion that a confluence of factors is helping me find calm.

  1.  Faith – I just know that God has a plan and that He’s got me.  Never in my life has He left my side.  Yes, there have been challenges, but I was a better and stronger person on the other side.  This is another one of those challenges that I will weather with Him sustaining me.  My aunt sent me a quote from a Dwight Nelson sermon:  “Faith takes us beyond reason, beyond empirical evidence.”  I can’t love this quote enough!
  2. Prayers – So, so many of you are storming the heavens for me and my family.  While some might say, “But you have more cancer, He didn’t answer your prayer.”, I would say that He did answer, it was just “No”, or “not yet”.  Just because He didn’t answer in the affirmative doesn’t mean He has let us down.  It would be easy to just throw your hands up and say, “I quit praying, He didn’t do what I wanted.”  But I would counter that this is the time to step up the prayers as well as changing the focus.  Yes, pray for healing, but also pray for understanding, acceptance, and faith.  So don’t give up on the prayers, keep them coming, because they work and I can feel them.
  3. Indeterminance – This might seem like a strange word to associate with calm, but in this case it fits.  Here’s why:  while I have more information now, it’s not complete information, meaning that my path is not yet determined.  We don’t know if it’s a new cancer or the old cancer.  We don’t know how much cancer there is in each area.  We have no information on it’s treatability.  As far as I’m concerned, that’s a whole lot of uncertainty, and I see no point in getting stressed out and worried.  Sure, the Grim Reaper is knocking at my door, but at this point, to door is still barricaded.
  4. Support – It goes without saying that I have the most amazing friends on the planet.  The amount of support and love pouring onto my FB feed today was unreal.  All of the texts and FB messages covered me in love.  It’s so, so amazing and I’m humbled!
  5. Hope – While I don’t have concrete information as to the extent of the disease, my gut tells me that I should still have hope.  In my gut, I feel like this is going to be treatable.  Think about the cancer in the bones.  You may be thinking, “Wait, I thought her bones were clear?”  Yep, I thought that, too.  But remember that the bone scan just shows the major structures while the PET scan is on the cellular level.  My thinking is that the size of the cancer was below the threshold of what could be seen in a bone scan, thus leading me to the conclusion that the cancer in the bones is small.  This is a good thing!  Obvs, it would be even better if it weren’t there, but that ship has already sailed and no use in trying to chase it down.  So, even though my scan lit up like a Christmas tree, it was only a miniature Christmas tree, and so, I am hopeful.

What’s next?  I see my oncologist on Monday afternoon to discuss, and I plan on having a slew of questions to throw at him.  I’m going to want to see the pictures.  I’m going to want to know how big and terrible, or not, this is.  I’m going to talk to him about alternative therapies (diet, supplements, etc) to complement the traditional therapy.  I’ll expect to leave armed with a plan of attack.

I’ll leave you with three youtube recordings of songs whose lyrics are giving me comfort, and with a quote from my Aspie 9 year old.

“Lots of cancer doesn’t mean you are dying.  Lots of cancer is just lots of cancer.”

 

Stuck April 22, 2017

Posted by Judy in Musings.
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I started composing this post in as a story format, but I got stuck.  Then I considered writing in memo format, but I got stuck.  Then I thought about tying the post in to rain and umbrellas and deja vu, but got stuck once again.  Since the third time doesn’t appear to be the charm, I’m throwing my hands up in defeat and going for short and to-the-point.


I knew when the nurse wouldn’t tell me the result over the phone.

I swore in my head when the nurse asked if I had a follow up appointment.

I tried to remain calm when the nurse asked if  I could come in an hour.

I just couldn’t see how any of these events would lead to a good result.

I knew I would be right.

I wish I had been wrong.

The aggressive, grade 3 cancer beast is back.

 


It’s the same lobular and ductal beast that attacked me last time.  Sometime next week I’m having a PET scan to see if the beast is anywhere else in my body.  It’s pretty likely that it is not in my bones since that scan came up clear a few weeks ago.  No idea, though, whether the liver, brain, or lungs will be clear.  The scan results will be available the same day, and the oncologist, hubby, and I will get our heads together to come up with a plan.  There are two paths.

  1.  PET scan is clear = local recurrance = new hormonal meds to kills off my ovaries, and thus the estrogen that the beast so loves; possible radiation; surgery to remove the 1.5 cm nodule
  2.  PET scan is not clear = metastatic disease = a whole lot of unknowns as management of a chronic disease is an ever-changing process

While we have some info now, it’s only partial, so not much will happen between now and the PET scan.  I do know the following:

  • Today was my last day taking Tamoxifen, since it’s apparently not doing it’s job very well.
  • I won’t be doing chemo again since it provides minimal benefit against ER+ (estrogen receptor positive) breast cancer recurrence
  • I’m tired.
  • Hubby is sad.
  • I’m praying that this remains a local recurrance.

 

 

When it rains . . . April 17, 2017

Posted by Judy in Musings.
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The past three weeks have presented me with a slew of challenges.  I got a cold, which is generally NBD, except that I had a concert and I needed to be well.  Despite my best efforts (rest, zicam, fluids), I ended up with laryngitis.  Despite my best efforts against the laryngitis (elderberry syrup, honey and lemon, anise tea, warm compress on my neck), I wasn’t able to get rid of it in time for the concert.  So for the first time ever, I had to miss a performance, which sucked.

But there’s more.  The same week that I got sick, as I was running up the stairs, I tripped, fell, and ended up with an excruciatingly painful muscle strain.  As in, I was laying on the stairs saying, “Ow, ow, ow, ow!”  It didn’t matter how I moved, the pain wouldn’t go away.  I’ve heard it said that having a kidney stone and giving birth are the most physiologically painful events.  I’ve given birth to four babies, without medication, and hands down, the pain in my back was so much worse!   It’s been three weeks since my fall, and while my back is better, my movements are still hampered and stiff.  Oh, and did I mention that hubby was out of town that week?  Fortunately, my rockstar mom was visiting.  Emotionally, though, I definitely missed having my other half there.

But wait, behind door number 4 you’ll find more challenges.  During the laryngitis/muscle strain week, I had my biannual check up with my oncologist.  The scarring in my armpit had changed, becoming more spread out and squishy, and I showed him a spot where it felt like I had a string in my armpit.  He poked around and decided that it would be a good idea to have an ultrasound to see what was going on.  I’ve had my pit scanned at both of the previous check-ups, so this seemed like NBD.   It took a few weeks to get an appointment, so I went in this past Friday.  As usual, the tech did the scan, went and showed the doctor the images, then came back.  The difference this time was that the doctor came along.  After scanning again, the doctor tells me that she’d like to do a mammogram to get a better look.  In my brain I’m thinking, “No, no, no, no, no!”  This was starting to feel oh so familiar.  This is exactly how it went last time.  I did have the presence of mind to ask, “Do you see something that is of concern?”  She responded by saying that there was a questionable area which she wasn’t sure if it was just scar tissue or something more ominous, and she preferred to err on the side of caution, given my history.  I whole-heartedly agreed, but was still saying, “No, no, no, no, no!” in my head.

They took me into the mammogram room and set me up for a picture of my armpit.  Now, you must be wondering how in the world they do a mammogram on your armpit, right?  I was wondering the same thing.  I mean, generally, the breast tissue is flopped onto a flat surface and then squished to smithereens with a plastic paddle-looking thing.  The last time I checked, my armpit was not floppable!  They set me up at a right angle to the flat surface.  The side of my  chest was vertical and my arm was horizontal, with my armpit at the corner.  Somehow, the tech got my pit onto the flat surface and then squished it with the paddle thing, which also dug uncomfortably into my shoulder.  It was awkward, but way less awkward and painful than the breast mammogram.  Anyway, after several attempts, a successful picture was taken and the tech went to confer with the doctor.  She came in and said that she wanted to go to the next step, a biopsy.  And I thought, “DAMMIT!”  This doctor was much more forthcoming than the one three years ago who kept parroting, “In an effort to provide thorough care . . . . ”  She again said that she just wasn’t sure about one spot, and the thickness and dark color of the scar tissue made it hard to see what was going on, so a biopsy was the logical next step.

I went into the scheduling room with the nurse.  It was the same room where the previous doctor had informed me that a biopsy would be necessary.  The same room where I sat on the couch and waited for the doctor for what seemed like forever, trying desperately to not freak out, failing miserably.  The superstitious part of me decided that this time, I would steer clear of the couch, in hopes that the news would be better this time.

My biopsy will be tomorrow afternoon, and I’ll find out what’s going on by the end of the week.  I want to have faith and believe that this will turn out all clear, just like the bone scan.  It’s just that I’m having a serious case of deja vu, and I’m feeling like when it rains . . . . . . it pours.

Remembering Frances Crawford February 29, 2016

Posted by Judy in Musings.
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A very special person passed away this week.  Frances Crawford.  She was my voice teacher in graduate school.  When I came to the University of Illinois, I didn’t know a single person, and I certainly didn’t know anything about the voice faculty.   That first summer semester, I just so happened to be taking a Music History course where I happened to meet Kathy Watson, (also a singer), who happened to introduce me to Frances.  (As an aside, I don’t actually think that all of those things just “happened”.  They were all providential.)  I liked Frances from the instant that I met her.  She was so welcoming and made me feel like this business of moving to a place where I didn’t know anyone wasn’t going to be so bad after all.  I didn’t know anything about her vocal skills or her teaching skills, but I knew I liked her.  I knew she made me feel comfortable.  And so, I asked if she’d be willing to take me on as a voice student, and she said yes.  I am forever changed for having had the chance to study with Frances.

That first year of grad school was quite the roller coaster for me.  Thankfully, I had two positive constants: Frances Crawford and Eric Dalheim.  (You can read about my experiences with Eric, here.)  Frances was always so upbeat and positive. She was a petite woman, but her personality sure packed a punch!  Not only that, her knowledge of how the singing voice worked was astounding.  Every lesson, I was amazed at her vocal knowledge.  I guess I shouldn’t have been given that by the time I met her, she had already been teaching for over 50 years.  But amazed I was.  I would be struggling to make a particular sound or to sing a long phrase in one breath and she’d say, “Try lifting just this part of your palate.”, or “You aren’t out of air.  There’s always more air.  Trust yourself.”  Once I figured out how to do the things she asked, it was like magic, the problem was solved!  She had a seemingly endless number of little tips and tricks up her sleeve.  She shared so many of those tips, that when a college friend visited me towards the end of that first year, his first comment was, “Wow!  You really have learned a lot this year!”

After grad school, I kept in touch with Frances and took lessons here and there whenever I had an issue that needed some of her magic salve.  We saw each other around town, she attended my wedding, and rejoiced with me at the birth of my first born.  Time passed, I moved away, she moved away, I moved back, she moved back.  We saw each other again about 3 years ago at a BACH concert.  That was the last time I saw her.

I learned of her passing on Friday, and it was like a dagger to my gut.  It had never occurred to me that, one day, she would no longer be around.  Maybe that should have been obvious to me, but it wasn’t, and I was stunned.  I attended her funeral services this weekend, and have been in a dazed and grief-stricken funk.  I’ve been trying to sort out why this has hit me so hard.  It’s not like we talked on a regular basis or anything, it had been three years since our last communication.  I’ve come to the realization that I feel the way that friends who have lost their parents have told me they feel.  Frances wasn’t my parent, but she was.  You see, she was a parent for my voice.  I met her when I was 23, the vocal equivalent of a teenager, a time when all sorts of tumultuous changes were going on and I was trying to sort out how to live with and use this voice I’d been given.  She was the vocal parent:  guiding my voice, encouraging me when things didn’t go well, challenging me to do more and be better, rejoicing with me when exquisite sounds poured forth.   As any good parent, she also influenced other areas of my life.  Being 23 meant that I was trying to sort out how to be an adult and figuring out who I wanted to be.  Having her as a constant, positive, energetic and encouraging presence during that time affected me for the better.

Friends who have lost their parents tell me that after the parent is gone, they see their parent and the influences exerted on their lives everywhere.  It’s a constant reminder of who they were.  Now that Frances is gone, I find that I’m hearing her voice in my head as I’m singing.

Each song that I sing is successful because of some tip that she taught me.

“Just let that note spin on its vibrato.”

“Let those low notes drop down into the basement.”

“That note needs more low support.”

“Imagine yourself as a glass without a bottom.”

“Put more [ae] behind that “e” vowel.”

People say that with time, they have a hard time remembering the voice or facial features of a loved one.  I hope that I will never stop hearing her voice in my head.  Her voice will be a reminder of all that she taught me.  I hope that her voice will forever share the gift of her magic salve.

Babywearing themed party October 11, 2015

Posted by Judy in parenting.
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DD turns 7 in two days. TWO DAYS! That means if I don’t get this blog post about her 6th birthday party up in two days, it will be seriously old news!

Six year old birthday parties are a big deal at our house. It’s the first party where we do more than just invite friends to come and play and eat cake. Additionally, there’s a theme. Choosing her theme was super easy. She is my junior VBE (volunteer babywearing educator) and has always loved all things babywearing. She totally shocked me at age two and a half when she was able to get her doll safely into a mei tai, on her back, by herself! She also loves to hold her own babywearing meetings with an oftentimes uninterested audience (her brothers 😀 ) So, the decision to have her babywearing as the theme was easy. What wasn’t easy was coming up with activities and games that fit the theme. Thankfully, my friend Holly, who throws the best and most creative birthday parties, gave me some ideas to get the creative juices flowing! (Thank you, Holly!)

We sent out invitations a few weeks in advance.
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When guests arrived, they were met by this display, and the gifts were placed on top of the woven wrap
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(The painting on the right was a gift from hubby when he returned from a work trip to South Africa. I adore this painting!)

Since people tend to arrive to parties not always on time, I like to have a filler activity for kids to do while guests arrive. The activity was to decorate the tail of a ring sling, which would be used in a game later on in the party. I made two mistakes: 1) glitter. . . . enough said! 2) glue, unsupervised . . . . The younger kids ended up dumping massive amounts of glue, which meant that their ring sling tail was never going to dry. Alas. They had fun, so I guess that was still a win!

Once they had finished making a mess decorating, I tossed a basket filled with scarves, aprons and other random pieces of cloth into the middle of the room and said, “Quick, it’s an emergency! We have to get our babies in carriers, but we don’t have any carriers! You’ll have to made do with what we have!” Watching them try to figure out how to attach their dolls with the basket goodies was pretty entertaining.  In the end, they all managed to be hands free, not necessarily safe for the dolls, but hands free!

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For their efforts, the guests all got doll mei tais.

After this activity, it was apparent that the guests needed a bit of education on safe babywearing, so DD gave a little presentation on the different carrier types and how to use them. Something about doing it in front of friends rather than your siblings made it more nerve-racking, but she still did a great job!
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She also helped them all get their dolls in their new mei tais. Much better, right?

Addy, Kellyn, Nibaw, Maya, Lily, Darby, Sara, Emily

The guests all wore their dolls/animals/etc in their carriers for the remainder of the party. It was helpful to have their dolls in carriers, rather than in arms, for the next game: an obstacle course. Some kids dove right in and ran pell mell through the course, some so vigorously that they lost their dolls! Ooops! Other kids took their time and were much more thoughtful and careful. Everyone had a fun time, though. What kid doesn’t love to run around like crazy!

At this point, the party had been going for about an hour. My plan was that the decorated ring sling tails would be dry. They weren’t, so playing “Pin the tail on the ring sling” was kinda messy, but fun! In true “Pin the tail” fashion, the tails were all over the place! But one child managed to pin it almost spot on.
pin the tail

The final activity was weaving. Woven wraps are a type of carrier, that are, well, woven! 😀 Each child got a little cardboard square with yarn, and they got to choose strips of fabric to weave. This was better suited to the older girls, who were 8ish, and they sat and weaved for a good 20 minutes. Even though the 4 and 5 year olds struggled with coordination, they still were able to create a nice little woven mat.
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Once all of the activities were done, it was time for food! Coming up with clever babywearing themed snacks was not hard, especially since Babylonia happens to give MANY of their wraps food names.

We had wraps and cupcakes and a drink,
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and fruit and veggies and crackers.
food 1

All in all, the party was a grand success, we celebrated babywearing, and everyone had fun!  That’s a win in my book!

MIA August 25, 2015

Posted by Judy in Musings.
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It’s been almost 2.5 months since my last blog post.  Some might think that’s because there’s nothing to report from cancerland.  While that is mostly true, (I do have a couple of posts still rolling around in my head), the real reason there’s been radio silence around here is because I’ve been too busy living my life this summer.  So busy, in fact, that I’ve barely spent any time at all online.  It’s been nice taking a little break!

Now that the school year has started up again, I’m easing back into an “The internet is sucking up my time” groove, so I’ll be blogging more frequently.  If you’ve joined me since the “I’m 37 and I have breast cancer” post, you may not know that cancer wasn’t the reason I started this blog.  It was started to chronicle random things about my life, ruminations, and rumblings.  My goal is to get back to the original and leave the cancer foolishness by the wayside.  I’m pretty sure there will still be healthcare related posts, but mostly, you’ll read about hilarious and not so hilarious happenings with the family, things that make me go “hmmmm”, other randomness that I find interesting, and lots of before and after posts sharing how I’ve fixed up and organized our new house.  So stay tuned. . . . . . . .

The path of least resistance June 12, 2015

Posted by Judy in Sewing projects.
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I’ve always been fascinated with the way water moves.  It just flows and bubbles and gurgles along, generally taking the path of least resistance.  I sort of think of water as being practical, not working too hard to break through dams and blockages.  Instead, it just meanders to another spot where there is less resistance and keeps on flowing.

My healthcare for the past 18 months hasn’t been very practical, taken the path of most resistance.  (Is that even a saying?  Probably not.  I think I just made that up!)  That’s going to change next week, though.  Next week, I’m taking the path of least resistance.  Some of you have asked what I’ve decided to do about the impressively large fibroid that’s taken up residence.

I’m taking the path of least resistance.

While a full blown hysterectomy would take care of the fibroid, it would also wreak all sorts of havoc, upsetting the applecart, forcing me to amend my plans.  And I have plans for this summer.  Plans to paint and build and design and garden and customize our house.  Plans that I’ve been working on for five months.  I’m not willing to give up those plans or put them on hold.  “But wait,” you say, “why can’t you just do the surgery after your plans have come to fruition?”

Because I’m taking the path of least resistance.

Having the big surgery would mean weeks of recovery.  Weeks of being unable to do projects with the babes.  Weeks of being “not quite myself”.  Weeks of not being able to wear the 2.5 year old.  And yes, I still wear my youngest in a baby carrier.  I hear the words, “Mommy, be carrier with you.” every. single. day.  I sort of thought we’d be done with the daily wearing by this point, but the Little Boss doesn’t agree.  He’s always been my super velcro baby supreme, so I shouldn’t be surprised.  He has, however, been extra clingy the past few months and most of the time, I’m the only one that is good enough.  It’s exhausting, but sweet all at once.  It’s pretty clear to me that babywearing is still important for him.  In many ways, I think it’s more important to him than nursing was.  I’m not willing to take that away from him.  While he was a trooper with the speed weaning, I’m not sure he’d fare as well with a sudden moratorium on being worn in a carrier.

Hence, I’m taking the path of least resistance.

Having major surgery would be another big change to add to the big changes resulting from the past 18 months.  The difference here is that this change isn’t strictly necessary.  I’m not going to die if I don’t have a hysterectomy.  Death could have been a very real possibility, however, if I had chosen to not have breast surgery.  Whether or not to have surgery was a decision that had to be made “right now or else”.  The pressure to make the correct decision was huge, yet I only had a short amount of time to contemplate the options.  The pressure to deal with the fibroid was also huge, until I realized that it was self-imposed.  Now that I’ve stepped back, I see that this isn’t a decision that has to be made immediately.  It isn’t a life or death decision . For the first time in over a year, I have full control over the when and how of my heath.  That realization is empowering.

And so, I’m taking the path of least resistance.

Having the fibroid embolized will likely not be a panacea.  I’m okay with that.  My hope is that the embolization will buy me time.  It will be a stop gap measure to get me through this summer.  To get me through to the end of the Little Boss’s babywearing days.  To get me through a year of relatively good health.  (I say a year since I’ll be revisiting the “to operate or not” issue again next summer.)

But for now, I’m taking the path of least resistance.

Next Wednesday is probably going to be awful.  The doctor made it very clear that this will be painful, but only for a day or two.  I can handle that.  I mean, come on, I’ve given birth to four babies, this can’t be worse than that, right?

I’ll just meander on over and take the path of least resistance.

Art May 25, 2015

Posted by Judy in Musings.
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1 comment so far

Two weekends ago, I spent a lovely day at Allerton Park with about 30 other cancer survivors at the first annual Cancer Survivor’s Retreat.  It was a pretty typical retreat, replete with key note speakers, break out sessions, yummy snack foods, a nature walk, and lunch.  Aside from getting to spend time with fellow cancer survivors, it was just nice to get away and do something just for me.  My favorite part of the retreat was the art therapy class.  I wasn’t planning on taking that class, but when I walked past the room, it called my name.  I have to say that the directions that were given were quite vague.  “Choose some colors that you like.  Place the lighter colors in the center and darker colors on the outside.”  That was it, the totality of the directions.  I slowly chose my colors, hoping that maybe more directions would be given.  Such was not the case, so I picked a yellow color and started smearing it around the canvas.  Then I picked the fuchsia color and smeared that around.

It did not look good, at all!

I looked around and was mortified to see that everyone else seemed to be doing these lovely pieces, and mine was horrid.  It looked like my 2 year old was fingerpainting.  (Not that his fingerpainting is bad.  It’s just that he’s two, and I’d rather not paint like a two year old, ya know?)  Not wanting to give in, I just kept adding colors and layers and tweaking things here and there.  I didn’t have a vision at all of what the painting would be.  Mostly, I was just trying to make it look better than horrid.  I worked at it for a long time.  I found that most people around me seemed to be at a stopping point, and I just kept dabbing and adding until I was able to sit back and think, “Okay, this isn’t horrid anymore.”  At that point, we were given the final directions, which were still obtuse.

“Draw two eggs.  Draw a small circle on top of each egg.  Draw a triangle at the bottom.  Now fill it in with some branches.”

Suddenly, we all realized that we had been drawing a background for two birds sitting on a tree branch.  While I was pleased that I’d figured that out, I wasn’t convinced that the birds would work with my painting. Again, I sat for a long time, thinking, and then adding the birds and branches.  In the end, I was really happy with how it turned out.  Everything came together so nicely, which wasn’t at all what I expected.

As we were sharing our work, it occurred to me that the painting was a good representation of my life the past 18ish months.  Things started out nicely, and before I knew what was happening, cancer came and smacked me in the boob and turned everything into a disaster.  It was so disastrously ugly that I sat back thinking, “How can this be!”  Slowly, I worked through the surgeries and treatments, getting through one day at a time.  I haven’t yet reached the point where I am pleased with the outcome, but I’ll keep working on that.

Eh, I guess that last paragraph is a little corny.  The painting really wasn’t intended to be representative of anything.  The whole goal was to just give us a way to unplug and tune in to ourselves for a bit.  The whole process was very calming and allowed me to be pensive.  (I’m thinking this might be a good technique to use with the babes when they get too wild and crazy.  Just give them some paints and a canvas and have them quietly work.  I have yet to try it, but I’ll let you know how it goes.)  And apparently, a little bit corny with my reflections on life 😉

So this post would be useless without pics of the painting.  I’ll tell you that the colors in the pics are not accurate.  I could not for the life of me get the colors to come out right or get them in focus, even.  If you want to get the full impact, you’ll just have to come for a visit =)

CAM01203

To operate or not May 17, 2015

Posted by Judy in Musings.
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6 comments

I need to pick your brains, my trusty blog followers.  I need to make a pretty big decision in the next few weeks and, as with the mastectomy surgery decision, I’m kinda going crazy!  But first, here’s a bit of background info.  You may remember the fibroid that was “discovered” during my CT scan back in December of 2013.  I say “discovered” because when the medical oncologist was all “Whoa!  You need to get that looked at!”, I was all “Um, I already knew about that, it’s no biggie!”  Well, it’s becoming a biggie and causing all sorts of problems.  Actually, I’m not positive that it’s the root of my heartburn problem, the weird random pains in my side and my intestinal foolishness, but it’s large enough that I’m willing to bet it is the cause.

I’ve spent the past 2 or 3 months talking with different doctors to get my options sorted out and I’ve come up with two options:  uterine fibroid embolization and myectomy/hysterectomy.  (Although it seems this has nothing to do with breast cancer, it’s actually tangentially related, which is why I’m sharing it here!)  I’ll give some brief explanations of the two procedures.

Uterine fibroid embolization (UFE) is a minimally invasive procedure where a catheter is inserted into the femoral artery, and then tiny pellets are injected to block the uterine arteries that are feeding the fibroid.  The uterus is resilient, so it will figure out a different way to get blood flow.  The fibroid, on the other hand, will slowly necrotize and shrink roughly 40-60%.  The procedure requires an overnight stay in order to help manage the pain (which is apparently quite intense), and then you go home the next day and pretty much go about your business.  What this procedure does not do is completely get rid of the fibroid, it just reduces the size, but it’s very successful in helping to do away with many of the symptoms.

The myectomy/hysterectomy surgeries are not really minimally invasive.  A myectomy is the removal of just the fibroid.  A hysterectomy is removal of the uterus, plus any of the following:  ovaries, fallopian tubes, cervix.  Both of these surgeries can be done either laparoscopically with a robot or with a large vertical incision in the abdomen.  The robotic surgery would result in three small incisions in the abdomen, and would require roughly 2 weeks of lifting restrictions and an overall shorter recovery.  The one downside is that due to the size of the fibroid, it would take a fair amount of time, 3-4 hours, to cut it up and remove it through the small incisions.  Doing a traditional hysterectomy with the large abdominal incision would be much faster, about an hour and a half, but would require 6 weeks of lifting restrictions and lots of recovery time, because it’s major surgery.  Unlike the UFE, both of these procedures would completely remove the fibroid.

So I should take a minute to discuss why this fibroid is a problem and needs to be removed.  After all, many fibroids are asymptomatic and can just stay in place.  In fact, I’ve had this fibroid for a long time, probably 5-8 years without any problems.  So what’s the big idea now?  Well, it’s enormous!  Seriously, it’s like I’m 3 months pregnant because the fibroid is the size of a small melon!  I had an MRI done of my abdominal area two weeks ago and we were able to see those images this past week.  I wish I had them to share with you, as the fibroid is really quite remarkable.  If you are looking from the side, the fibroid fills the entire space from my abdomen to my spine.  When seen from the front, it takes up a third of the space from left to right.  The top to bottom measurement is the largest, measuring 5 ½ inches.  This means that the top of my uterus is just above my belly button.  That’s not where it’s supposed to be, unless you are pregnant!  Keeping in mind the fact that I’m 5’1” with a VERY short torso, this fibroid is basically taking up most of the space in my abdominal cavity, meaning that anything else that is supposed to be there is squished.  Heck, they couldn’t even find the left ovary with the MRI because it was so squished behind something!  So yes, something needs to be done.  The question is, what?

I like charts, so I’ve made one with the pros and cons.  But before I share the chart, you are probably wondering what in the world this has to do with breast cancer.  I am currently taking an anti-estrogen medication called Tamoxifen, and I’ll be taking it for another 4.5 years.  The purpose of the medication is so suppress the amount of estrogen so that in case there still is cancer floating around my body, it will have fewer places to attach itself.  Here’s the rub:  the drug works as both an agonist and antagonist towards estrogen.  The estrogen in breast cells is treated antagonistically, or suppressed.  The estrogen in the uterine cells are treated agonistically, or enhanced.  See where this is going?  The drug I’m taking to help prevent the return of breast cancer is making the fibroid grow.  Nice, right?

The other way this is related to breast cancer is because of the ovaries.  If I choose to have a hysterectomy, the question of whether or not to take the ovaries needs to be addressed.  Generally, they don’t need to be taken.  But, it might be wise to have them removed since they are biggest producer of estrogen and removing them would further reduce the chance of a recurrence.  Estrogen is still produced in other parts of the body, so I’d still have to take drugs, but it would be a different drug called Arimidex, which is an aromatase inhibitor.

Okay, here’s the chart.

Procedure Pros Cons
UFE Minimally invasive Doesn’t get rid of the fibroid
Quick recovery time, just a few days May or may not alleviate the symptoms
Relatively low risk
Done under moderate sedation, which means no intubation
Myectomy/hysterectomy Completely removes the fibroid Major surgery which requires intubation (LMA is not an option due to the position one is in during the surgery)
Robotic/laparoscopic Shorter recovery time, 2-3 weeks Longer surgery = longer intubation (3-4 hours)
Only 2 weeks of lifting restrictions There’s no guarantee that this size of a fibroid can be treated laparoscopically.   If it’s too large, they’ll have to switch to the traditional hysterectomy
Traditional hysterectomy Shorter surgery = shorter intubation (1-2 hours) 6 weeks of lifting restrictions, which means no babywearing for the 2.5 year old, who is REALLY into that now.  He already had to be weaned early, not sure I want to “wean” him from wearing early, too.
Long recovery time 4-6 weeks
Ovary removal Greatly reduces the chance of breast cancer recurrence Would require a change in medication.  Right now, Tamoxifen is great, I have no side effects.  Who knows if that will be the case with Arimidex.  I could be swapping one set of problems with the fibroed for another set with the meds (hot flashes, joint pain, sore throat, nausea, vomiting, numbness/weakness in hand/wrist, etc.)

I think I’ve thought of all of the pros and cons, but maybe a fresh set of eyes on the situation will reveal more.  The other thing to consider is if I do the UFE and the results are not satisfactory, I can always opt to go the surgical route.  If I do surgery off the bat, well, there’s no going back from that.

And one more thing . . . .when am I going to catch a break?  I’m so done with doctors and health drama and foolishness.  I want to be healthy again.  That’s not too much to ask, is it?  I’m just gonna go sulk in the corner while you all contemplate a solution to my current dilemma!