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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

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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

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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.

MIA August 25, 2015

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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. . . . . . . .

Art May 25, 2015

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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

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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!

All clear, probably April 28, 2015

Posted by Judy in Musings.
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I’m sure it comes as no surprise to anyone that foolishness continues to come out of the radiography department.  When we met with the radiation oncologist today, he say, “Hmmm, well, they (the radiologists) didn’t do what I asked.”  I responded, “You’re lucky you got what you did!”  Nope, we weren’t cynical, not one bit!  He had asked they the not only look at the spine (the bones, etc.), but also at the soft tissues, hence, the need for contrast.  Only read the bone portion had been read.  The rad onc looked at the scans and didn’t see anything alarming or amiss, but that’s also not his area of expertise.  So, he is going to ask that another radiologist review it again, this time including the soft tissue in the analysis.  If anything is wrong, I’ll get a call.

The upshot of the matter is that there’s nothing to be concerned about at this time.  This is good.  It doesn’t, however, give an answer for why the pain is there, so I’m just supposed to keep tabs on it.  If it worsens, I should either request an MRI or see the people in the spine and neck center.

How’s that for a short, sweet, and to-the-point post?  And, it’s good news!  Huzzah!

The telephone game April 27, 2015

Posted by Judy in Musings.
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Remember that childhood game, telephone?  You know, the one where you whisper something in someone’s ear and the message has totally morphed by the time it gets to the person at the end of the line?  Sometimes, it seems to me that health care providers like to play that game.  It certainly seemed that way at my CT scan on Thursday.  After returning to the lobby, I said to my friend who had accompanied me, “Well THAT’S going to make a good blog post!”

I arrived at the Heart and Vascular Institute at 9am, got checked in (by a former student, no less) and then got called back for the test.  My friend and I stood up to go, but they asked her to stay in the lobby since the other waiting room was getting full.  “It should only be about 5 minutes, anyway.”  That should have been my first clue that something was up.  I figured they were planning on getting me ready, then I’d go back to the lobby, then get called to the back again.  I knew it couldn’t be a 5 minute test since the scheduler had said it would take about 25 minutes.  We enter the room, she gets me situated on the platform and says, “This won’t take long at all.”  I thought about just letting that comment slide, but knew that didn’t seem right.  For starters, no-one had started an IV for the contrast, and while medical advances have been vast in the past few decades, I’m pretty sure they haven’t figured out a way to get contrast into your body through osmosis.  So I piped up, “Aren’t you going to use contrast?”  “No, we don’t use contrast for this test.”  Crickets.

“Um, I’m pretty sure the doctor ordered a test with contrast.”  “Really?  Because scanning this part of the body doesn’t generally require contrast.”  I tried to remain calm, even though my blood pressure was already on it’s way up.  I explained the whole situation, including the confusion of the tech, the conversation between the radiologist and the radiation oncologist and the fact that the scheduler, a lovely man named Kelly, had made a point of putting a note in my chart stating that the test had already been verified with the doctor and it was to be the CT scan with and without contrast.  This was all very awkward for me because I was laying on this platform with my head in a supremely uncomfortable head holder thing such that I couldn’t really move my head much to look at the tech.  She thanked me saying, “That was really informative.  I’ll be back.” and suggested that I sit up while I waited.

A few minutes passed, my mind racing the enter time.  She came back in saying that there are protocols for the tests, and using contrast would fall outside of the protocol, so another person would be looking into it with the radiologist and getting back to me.  Again, I was left alone with my racing thoughts.  Just as I had gotten up to send my waiting friend a text message, a lady walked into the room, apologized for the confusion and said they were ready to get started.  Again, I thought about letting the apology go without comment, but then decided that enough was enough.  After asking me a set of standard question (Do you have diabetes?  Are you allergic to Iodine?  etc.), I said I had a question for her.  “I’m just wondering how this whole mix-up even happened.  It was clearly stated in my chart that this was the test the doctor wanted.  Did people not see that message?”  “Well, when we look things over the night before . . . . . . .”  The rest of her words turned into the something very akin to what the adults would say on that kid’s show, whose name I can’t recall.  The Muppet Show, maybe?  . . . . .Wahw wahw wahw wahw wahw .  .. .  I looked away, shrugged my shoulders and said, “Whatever.  I’m still not happy about it.”

I don’t tend to think very quickly on my feet.  I’m forever wishing I would have said this, that or the next thing, making myself out to be much better at arguing with people than I really am.  Fortunately, quick thinking was with me that morning.  I continued, “If I wouldn’t have said anything, you guys would have done the wrong procedure!  I shouldn’t have to check up on everyone to make sure they aren’t screwing up!  I shouldn’t have to advocate for myself, yet here I am and I’m frustrated!  I’m sorry you’re getting the blunt end of my frustration, but this sort of thing has been happening throughout my entire illness and I’m just tired of it!”  She again apologized, stating that she felt especially terrible that she was involved in the mistake.  (She had been the person to review the cases the night before in preparation for the day’s procedures.)  “I’m actually on a committee created to keep this sort of thing from happening and to improve the patient’s experience.  I’ll definitely be taking this situation back to them for review.  My name is Haley, if you ever have any other dealings with this department, please ask for me.  I want to be sure that you have a problem-free experience from here on out.”  Maybe she was just paying me lip service, but I was satisfied with her response.

She went on to try and explain why things had transpired the way they had from her perspective.  I’ll be honest, I wasn’t really listening, because by that point, I didn’t care.  I’d said my piece and was ready to get this stupid test over with.  I do recall her saying something about wanting to be thorough and make sure the radiologist had the correct test to read and to make sure there weren’t any mistakes.  Now that I’m a few days out and have had time to think about it, that last statement is totally ludicrous.  Clearly, their efforts for accuracy caused them to be inaccurate.  I’m still wondering how they a) missed the order which I thought clearly stated “CT scan with and without contrast” and b) how they missed Kelly’s note stating that the test had already been verified as being the correct test.  Was anyone ACTUALLY reading my chart?  According to Haley, my case was outside of the norm and didn’t fit into the protocols, which is why some of the mistakes happened.  Uh, sorry, that doesn’t give you a free pass to go on ahead and screw up.  If you are married to having protocols, you should have one in place to deal with those cases that fall outside of the norm.

Anyway, so the air was cleared and we moved on with the test.  During my entire diatribe, there was this other guy floating about the room busying himself doing who knows what.  At this point, he was introduced to me as someone who was training.  I smirked and said hello.  Maybe, just maybe, he learned a lesson that will improve the care he provides to patients.  Maybe.

The actual procedure was fairly unremarkable.  Haley did an amazing job at inserting the IV.  Seriously, zero pain, which was a first!  The iodine injection was creepily weird.  At first I felt a cool sensation in my veins, and then it was very warm, very quickly rushing through my arm and throughout my entire torso, making me feel like I’d peed my pants.  They did the scan, took out the needle and I was on my way, but not before Haley said two more times that she wanted to be the one handling my care in her department from here on out.

All in all, I guess it turned out fine, thanks to me!  I’ll find out the results of the scan tomorrow.  I have no gut feelings on which way it’s going to go.  I hope that it’s nothing, but am prepared for it to be something.