Category: Inflammatory breast cancer

The Boogeyman’s Back….(a poem)

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The boogeyman lives under my bed –

Sometimes he tries to sneak into my head

I plug my ears and stomp and shout

Trying to tearfully block him out.

He used to be just a scary story

Until the day he arrived in his glory

The news came through the telephone line –

“You have cancer” – now you’re mine.

We drove him back under the bed

Did surgery, chemo, everything they said

Prayed and hoped he would stay hid

But that’s not what this monster did…

Today I got another call

That pushed my back against the wall-

The sucker’s rearing his ugly head

I “need to get checked out more”, they said….

It may be nothing or it may be bad –

Oh man, this news makes me scared and sad!

So here we go for another round

Trying to not flip upside down.

God only knows and He’s not saying

What around this corner is waiting

But my God is bigger than this boogeyman

And I’ve got to trust that I’m in His hands.

3/24/16  Teresa Norman

 

Tuesday was the mammogram, Thursday was the call where they said they need more imaging and a pathologist to sort out what happens next in my life.

On Being Radiated

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I wonder,  if you hooked a radiation oncologist to a lie detector and then asked him these questions, and got these answers, would the machine go nuts?:

  1.  How does radiation affect people?
    1. Oh, you might get a little tired by the end, but it’s way easier than chemo.
  2. Do people have to take time of work?
    1. Most people just sail on through.

I swear the doctor was a liar!  (Or was that just a well-honed marketing pitch?).  Each time they checked my skin to make sure I wasn’t overcooked, he said, “Everything was fine.  You’re right on schedule.  This is how it’s supposed to look…”  There was one day on week five (5 days per week for 33 treatments), where I called in and said, “You say I’m fine, but I’m not fine and I’m not coming today.  I can’t do this.”  That was the one day mental break down I allowed myself to stay home, take pain medication and sleep so I could ignore the fried areas of my well-radiated chest.  Of course, that day I missed was tacked onto the end of the process.  I missed one other day on week 6 because he agreed I would be overcooked, so I got a three day weekend to heal.  It helped.

At the end of the process, final skin check, his nurse said, “I want you to know, Dr. L. is not mean, he was just really scared of your kind of cancer and we want to win.”  Ok.  He’s forgiven.  Big picture.

A week and a half after radiation ended, still applying silvadene cream to open burns the size of a dollar bill, but it has gone WAY down and is starting to hurt way less.

Clinical trial and new oncologist

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I’m a little behind on figuring out how to process the events of the last four months (post surgery).  Pre-surgery, treatment for Her2+ Stage IIIB inflammatory breast cancer was going to be the same, no matter where I went.  I received excellent care at Swedish Hospital in Ballard (Seattle), and greatly appreciate the nurses and the ever-special Elisa.  But, for this stage of treatment, there were different possibilities to consider, and they weren’t offered at Swedish in Ballard.

Because of the “residual tumor burden” left over after treatment with Perjeta, Herceptin, and Taxotere, I qualified for the Katherine trial – a clinical trial being done at Swedish on First Hill.  This is a stage III clinical trial of a drug called Kadcyla, which is currently approved to treat metastatic breast cancer, but they want to see if it helps people like me.  This meant getting in with Dr. Erin Ellis, who is a very good communicator, and very thorough, and having infusions of Kadcyla ever three weeks for 14 treatments.

 

When the Dr. is Being Too Nice…

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Yesterday was the one week follow-up after surgery.  There was good news and bad news.  First the good news….I got one of my surgical drains removed.  Yay!  That is exciting because that one hurt every time you moved a hose.  The other good news was that the surgical margins (edges around the pieces of me they amputated) were clean – no cancer all the way out to the edge.  This means no more surgery.

But that wasn’t all….out of the 18 lymph nodes they took out, 10 of them still had cancer that had not responded to treatment.  That means my response to the trio of chemo drugs they had used was only partial.  The oncologist will make the final decisions on what happens next, but it looks likely that radiation will be postponed in favor of more chemo with different drugs.  Since radiation just attempts to kill whatever cancer cells are left in the area where surgery was (local treatment) , that becomes a second priority to killing whatever ones may have wandered through the lymph system and set up shop in distant locations and may be preparing to become a metastatic nightmare (systemic treatment).  This may also involve another PET scan or CT scan to see if there are areas of problems in other organs that weren’t big enough to show up when they did the original scan in March but are now.  We have an appointment with the oncologist next week.

Have I mentioned how grateful I was to be done with chemo?  That no matter how anxious I was about the disruption, logistics and potential exhaustion of radiation 5 days a week for six weeks while trying to work full time, I could always comfort myself with “at least you’re done with chemo.”

We were looking at Facebook last night as a way to distract ourselves from the news of the day that we didn’t want to marinate in, and a post from a dear friend who lost his wife to cancer a few months ago was there saying how much he missed her and how relationships are really all that matters in life.  Tears.  Fears.  Hard to keep  emotional distance from that at the moment.

Glad I’m walking through this with an amazing family and some very supportive friends.  But wish we were all walking somewhere else instead of down this road.

 

One Week Post Surgery

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A week ago today, I was in the operating room about to have a modified radical mastectomy.  Today, I am home enjoying time off walking, napping, catching up on a massive pile of paperwork that somehow got ignored during chemo, and giving thanks to be on this side of the process.  I’m amazed how much energy not being at work and not being on chemo is putting back into my life!!!  Trying to focus the energy on healing and on loving the people I am SOOOOO blessed to have around me.

Tomorrow, I might get one of my drains out.  This is really exciting.  We might also get the pathology report back.  This is a little scary.  I don’t know if it will show anything different than the one after the biopsy, but it was the next big milestone on the journey.  There’s still 6 weeks of radiation and another 8 months of Herceptin to go.

Thank you, Pastor Eugene and Minhee, for coming to the hospital to pray before surgery.  I never expected to see you folks at 6 a.m. and feel very very grateful.  God is good, and you both are amazing.

Goodbye, Taxotere!

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On July 8th (our 37th anniversary), I had my last dose of Taxotere, Perjeta and Herceptin.  Hallelujah!  The night before, I had a nightmare that something else was wrong with me and I had another kind of cancer and was going to have to start chemo over again.  Talk about waking up in a panic!

The side effects of this three drug cocktail seem to have been new and different every treatment.  This one had some intestinal issues that necessitated a trip to a different kind of surgeon to see what kind of repairs might be necessary.  Fortunately, it’s a “simple” fix and can be postponed until after breast surgery to avoid any risk of infection.

Last week was a good week.  I went in to work early and worked 6 hours and then went home.  Then I’d go home and sleep for a couple of hours.  I started getting my brain back, which is really exciting.  It’s not the greatest brain, but it beats the chemo fog by a long shot!  I was amazed how much better I could think and problem solve when I’m not totally exhausted.  This process kind of reminds me of the stories of the frog thrown in the pot of water and being boiled but not realizing it because the heat gets turned up slowly…..my experience with chemo was kind of like that.  You function because you have to, but until you start functioning like “normal” again, you might not realize what kind of toll it’s all taking.

This last week we were incredibly blessed with a couple of visits from young old friends we haven’t seen in a few years.  Chris and Melinda and Eunice – thank you!  What a gift to see a faithful God in such kind and loving people.  You blessed us!

Nine days until surgery…..there is a bit of terror that creeps in once in a while from memories of waking up with a tracheotomy last time I had surgery, but I have considered the options I’ve been given and know the way out is through.  Trusting in the One who knows the future.  I’m in His hands.

 

 

So this is a low blood count

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End of June…..It’s been quite a week.  Monday, I went for IV fluids, after spending most of last weekend asleep on the couch.  It really helped me perk back up, and I made it through the rest of the work day on our busiest day in the past year feeling fairly functional.  The next day had an ambush in store, however.

My job is to answer questions by phone or in person to help people understand their bill, their insurance, and what their portion of charges is going to be and why.  It’s busy, and sometimes it’s very intense.  It’s 100% detail oriented, and if you’re having a 65% day, that can be bad.  I could ‘t figure out what was wrong with me – why I was getting SOOO frustrated with some of the calls.  By the time the day was over, I was exhausted.  My darling husband was picking me up and saving me from a long bus trip, but it was hard to even walk to the car.  When I got home, I skipped dinner and went to bed.

That’s when I decided something was way off and took my temp to discover 101 and rising.  The next three days were spent incredibly sick, sleeping and running around 102 for no particular reason other than my blood count was really really low and chemo is unpredictable.  I had my sister-in-law take me in for fluids on Wednesday, and they did a blood test, but found nothing sinister other than this is one of the side effects that happen sometime.  Long week off work for three days.  I don’t ever remember  being so tired, other than during childbirth.  Grateful for any day that even resembles normal.

 

The Cumulative Effect

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Chemo is “interesting.”  The fact they can put medicine (poison) in you in the right amounts and combinations to kill mostly the cells that need to die, is pretty amazing.  Some of the side effects, though, not so much.  And then, the dr said recently, there is a “cumulative effect.”  (This is what explains why it is getting harder and harder to show up for work every day). Things get harder as this stuff builds up in your system.

My particular drug combo is Taxotere, Herceptin and Perjeta.  Every week is different.  The treatments are every three weeks (one more to go! – then just Herceptin until March). Treatment was on Wednesday, and Thursday I managed to work two hours before I had to go home and collapse.  I slept 16 hours that day.  Friday I worked.  Saturday, we had kids and grandkids over for father’s day, and I made it until 3 o’clock before my battery was completely unplugged.  I spent the next 16 hours asleep, then slept all day Sunday.  My hands, once again, are showing the burns and blisters from the chemo, and my fingernails appear to confirm I am going to lose about 6 of them before this is all over.  But today, it appears I can function (as far as the new, temporary version of normal goes).

Last treatment, it was necessary to take anti-nausea drugs twice a day for the first week.  This time, only once so far.  This morning I am waiting for it to be 8:30 so I can go get a nice bag of IV fluids added before work.  Countdown to surgery = 43 days.

 

How to Hide a Bald Head

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Three out of the three chemo drugs I’m on list hair loss as a side effect.  Now, although my thin, straight, fine hair may not be thick and luscious, but it was mine.  I liked it.  When it started falling out in clumps everywhere (after the 2nd session of chemo), I did the reasonable thing and had it buzz cut.  I bought a wig, thinking I could still look reasonably normal at work.  It’s a nice wig.  It sits on it’s little stand on the table in my room, looking lovely.  The problem is, I only lasted an hour with it on my head.

The part of my research I seem to have overlooked was that hair falling out can make your head very sensitive.  By the time I got to work the first day with the wig (a one hour bus ride), I had a huge headache and knew the day was not going to work.  I promptly went to the hospital gift shop, bought a scarf, and thanks to the YouTube videos I had already watched, tied it on as securely as possible and took my newly decorated self to the office.

I am blessed to work in a place where diversity is the name of the game.  We have beautiful ladies with many different religious and cultural backgrounds covering their heads for a variety of different reasons.  As a white chic, most people who are going to ask look at my scarf and figure I’m having chemo.  Some of the other beautiful ladies have asked where I learned to tie these wraps because they like them.

I found a lot of ideas (most of them braver ones than I’m ready to try) on Wrapunzel Ladies.  These lovely Jewish ladies cover their heads for religious purposes, and make it look feminine, beautiful, colorful, and kind of fun.  They have many tutorials on You Tube, as well as a blog.  I am grateful to them for showing me how to do this so it feels like a choice and not so much like a sentence.

 

 

 

Sometimes it’s just time for a meltdown

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I try to be pragmatic, practical, reasonable and emotionally stable.  But once in a while, that just doesn’t work.  Last week we went for the pre-surgery appointment to make sure we could schedule surgery for August.  Everything looked good.  I was thrilled to finally have this “end” of this stage in site and on the calendar, but that night I lost it.

A whole new range of undefined challenges come with having surgery scheduled.  Radiation will follow surgery – how will I react to 5 days a week for 6 week while working full time?  How tired do you get?  What if the hoped for “100% pathological response” to chemo (the one that means you are a lower risk for re-occurrence), doesn’t happen?  What if the MRI shows that not much really changed after the 6 treatments with Taxotere, Herceptin and Perjeta that I am in the process of enduring?  I want some good news here!

While I try maintaining an attitude of gratitude (I have a truly amazing husband who loves me (the kindest person I’ve ever met), fabulous friends, neighbors who are kind, coworkers who are supportive, three children who are fiercely loyal and loving, and four little grandbabies who know who to drive depression and anxiety far away.  I know God is in control of my outcomes.  But some days, fear creeps in.  Words like aggressive and invasive are scary words.

Thursday was my day for a meltdown.  A good cry (if there is such a thing), a warm blanket, a hug, and some sleep, and Friday I was ready to drag myself through another fun day.

Dear Dr – You’re Fired!

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On Tuesday, March 3rd, we had our first surgical consult.  This was going to be where we got to talk to a doctor, get our questions answered and find out how to fight this new monster in our lives.  My husband and I showed up early, waited as patiently as you can wait after not sleeping much for the last four days, and had a list of questions prepared.  Over the weekend, we had gone through an online presentation from the National Breast Cancer Foundation that was like a tutorial on cancer ( see link below ) and, while many people recommend staying away from the internet so you don’t scare yourself too bad, I had to have information (and it gave us terminology to be able to understand what the doctor was saying).

Dr. L. did an exam, drew some diagrams, and then sat us down and said, basically, “You need to listen to what I’m going to say, I’ll go pretty fast so try to keep up.  If you have questions, I will probably have answered them by the time I’m done, so be quiet and listen.”  She then proceeded to give us a nice presentation on inflammatory breast cancer (approximately 10 minutes).  At the end of her presentation, we tried to ask questions, but she was done and the appointment was over.  There were no questions answered, other than confirming that it was the inflammatory kind of cancer (she answered that in her presentation).  She had shown us on the ultrasound how a large area of the skin was thickened and involved, confirming what we feared.

We were turned over to her staff to schedule an MRI in two days and sent on our way.  When we got to the car, I was in shock, and my husband was ready to look for another doctor.  She may have been smart, highly skilled, good at presentations, but she sucked at meeting what this family needed.

Dr, you’re fired!  My wonderful husband took the next day off to spend on the phone while I went back to work and try to find out where to go from here.  He got us an appointment for another consult with a surgeon in two weeks.  Her staff was fabulous at answering some of his questions on how this works, what to expect, who answers what and made us feel like they realized this was important to us.  I’ll be seeing Dr. Christine Lee at Swedish again today (see link below), hopefully to schedule surgery for August.  She did not blow off some of the issues my previous experience with being a “difficult intubation” presented (a trach is something I would really like to avoid, and she inspired confidence that is possible).

Inflammatory Breast Cancer

Dr. Christine Lee