Gleaning Perspective From The Latest Scan Results

me and auraThe latest PET scan results are in.  The news (as far as I’m concerned) is pretty good.

There are spots of cancer around my left chest/neck/shoulder/armpit/sternum area which we already knew were there.  I can feel them through my skin (now that the lymphedema swelling is going down) but they don’t seem to be getting any bigger, which is great.

A few new areas lit up in the bones of my back and shoulder.  But the SUV numbers are on the low end (5-6) and I’m not having any pain.  I’ve had areas on my back light up on prior PET scans and then disappear entirely or not show up on other scans.  So I’m not too concerned about this either.  [Besides, when I was first diagnosed my PET scan SUV ratings were 13-15.  And a rating less than 4 can often be simple inflammation or scar tissue].

The other good news is that the two “suspicious” spots from my recent brain MRI did not show up on the PET scan so it would seem that the brain is clear.  And nothing came up in any of my organs either which is fantastic.

The only slightly weird thing is the appearance of a pleural effusion around my left lung.  A pleural effusion is a build up of fluid in the tissues between the lung and chest cavity.  This fluid could be a bunch of different things.  It could be cancer.  Or not.  It could also be from the blockages in my lymph system that prevents my bodily fluids and blood from going where they need to go.  Or a result of the chemo.  Or from the blood clot I had in my lung.  I’m not having any symptoms or pain.  And my oncologist does not seem overly concerned.  For now, I think we’ll just watch it.

So that’s that.

I don’t put a tremendous amount of weight into my scans.  With all the scans i’ve had over the last two and a half years I’ve learned that they (like the tumor marker numbers) are not fool proof.  Nothing is I guess.  There’s always room for error and false positives and inaccurate readings.  For me, the best gauge of how i’m doing is how I feel.  And these days I’m feeling pretty good.

I also made the decision to stop taking one of the three meds I’m currently on – Taxotere.  It is the only chemo med i’m on.  I will continue to take the other two meds (Herceptin and Perjeta) which are specific treatments for my HER2  positive cancer.  They target my cancer cells specifically and don’t harm my healthy cells (although both drugs can cause heart problems so we need to monitor that with regular echocardiograms).  Some may think it’s a gamble to stop one of my meds but it’s a gamble I feel good about.  Plus, I can always change my mind.

When I asked my oncologist what the usual treatment protocol is for people in my position she explained that most do the drugs until they achieve “maximum response” and then take a rest or try something new.  The reality is that for most stage IV breast cancer patients ‘maximum response’ is just a shrinking or stabilizing of the tumors.  I think it’s only 2-5% who actually get rid of them all together for an extended length of time.  For the rest, it becomes a life-long chronic illness.  Trying one drug until it no longer works and then switching to another.  Always hoping the cancer doesn’t grow or spread further while managing horrible and annoying side effects that may never go away.

And i have to say that living with the side effects of treatment is a pain in the ass.  But it’s interesting how the body adapts.  With the fingers on my left hand barely functioning and the nails on my right hand about to fall off I’m surprised at how the everyday stuff still gets done (albeit with way more effort, frustration, pain, and time).   And you realize how much you take for granted…  Typing…  Buttoning up your pants…  Washing a dish…   Doing your daughter’s hair…

Plus, the sheer exhaustion I feel most of the time drives me crazy!  I want more energy!  More energy to be with hubby and Miss M…  To live life…  Travel…  Be with my favorite people…  Pursue my dreams…  It was great having people here visiting and helping out the last couple weeks.  Now that they’re gone I’m struggling again.  The housework doesn’t get done (not a big deal, I know.  But it’s been 3 days and the dishes in the sink eventually must get done).  Making a meal and cleaning up after takes every ounce of energy I have.  But I plug along…  And eventually the most important stuff gets taken care of somehow or another.  Plus now, at the urging of family and friends I am going to inquire about having a home health aide come in to assist with the household stuff.  And hubby and I are considering asking his parents to come up from Brazil to stay with us for a while too.

And still I count my blessings and always know it could be worse.

I can’t believe how many strong young mothers out there are facing cancer.  Dealing with extreme pain and the loss of life as they know it.  So many young kids watching their moms die.  This shit is no joke.  And it sucks.  And you can’t help but ask, “Why?”  How is the loss of so many vibrant amazing women part of the master plan???

I try to remember what Sylvia Boorstein said…  Life is painful.  Suffering is optional.  And I am determined not to let cancer run my life.  Determined to have the most fun I can while I’m here!

On that front…  I decided to pursue my dream of becoming a dance & movement therapist.  I applied to the summer intensive 3-year program for mental health professionals at the 92nd Street Y in New York City.  I even have a dance audition at the end of the month!  Fingers crossed I get in.   (And yes, my oncologist knows all about it).  I’m thrilled at the idea of being able to help other cancer patients heal and process their feelings through music, dance, and movement.

Some may say I’m crazy for trying to take on so much while in the midst of treatment.  But I say, “Why not?!?”  We all need more fun in life.  More passion.  More stimulation.  Something to look forward to.  Something to live for.  Instead of terminal or chronic illness being the end of everything, why not let it be the beginning?  Why not use the “free pass” to truly live your life?

Life is too short to sit on the sidelines.

I understand that life is painful.  But I refuse the optional suffering.

Peace.  -T

Miss M & Papai's special hand crafted carnival mask!

Miss M & Papai’s special hand crafted carnival mask!

Sunday arts and crafts time

Sunday arts and crafts time

12 Responses

  1. Hooray for you on so many levels, Terri! I had Taxol, and I really felt like it was the most damaging of the “cocktail”. Everyone said it would be easier than Adriamycin, but I hated it.
    That’s awesome about the dance program! Why wait around? I really need to take a lesson from you and get my ass in gear to find out what’s “next”. I’ve been spending way too much time lately obsessing about hormones and Tamoxifen and blah..blah..blah.. You’re truly inspiring.

  2. Many have said it, many times – but T I just LOVE your attitude to your life and dealing with your illness. You truly are inspirational. Wishing you all the best x

  3. Every time I read your blog I think the same thing – you are an incredible woman Terri. As we say in the Maori language ‘Kia Kaha’ (stay strong) my friend.

  4. You’re such a fighter, Terri! Be sure to let me know when you’re in town, and I’ll take you out to lunch or dinner or whatever works….Did I ever get you a copy of Toni Bernhard’s book, How to Be Sick? If not, send a snail address and I’ll pop one in the mail…..

  5. Terri I’m so glad you came into my life! You are healing to me in ways you will never know. I love that you are so honest & true to yourself. It serves you well & I’m sure propels you in the right direction. I pray that you feel better with each day.

  6. GWW, good news is good news, dammit! I’m happy as all get out for you.

    I wondered, when you get scans do you have the opportunity to actually LOOK at the images with your physician, or does your MO rely solely on the written reports? I had the opportunity today to look as my latest MRI result with an interventional radiologist and the size of the tumor in my sacrum cause significant bruising on jaw as it hit the floor repeatedly. My MO relies solely on the written reports and they don’t reflect any sense of urgency until it’s so large it’s causing a multitude of problems. So I am curious about your situation.

    • Scorchy – thanks for the tip. When I see my doctor this week I’ll ask her about that. I have seen some of my scans in the past. It’s very helpful. I agree. And I definitely agree that I need to find out more about these most recent scans.

  7. Just caught up to here in my e-mail. LOVE your processing!! Totally agree with your plans to live fully … looking forward to hearing about your dance audition! Keep on truckin mama … do whatcha gotta do now …

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