PET/CT Scan & Oncology Updates

On July 22nd I had a whole body PET/CT scan at Aultman Hospital.  I had to do a four hour fast that entailed no food, no caffeine, no drink (except plain water) and no nicotine for 4 hours prior to my appointment.  Our arrival time was scheduled for 7:15am and I hadn't consumed anything (except for water - you are supposed to be well hydrated) since 11pm the night before.  We arrived at 7:00am and shortly thereafter I was taken back to the mobile unit where they checked my blood sugar (fasting serum glucose level: 99 mg/dl) before injecting me with F-18 FDG (Fludeoxyglucose).  I had to wait about an hour in a waiting room separate from my husband - and the time went by fairly quickly thanks to a visit from my high school bestie (she is a nurse in Radiology and was on duty that morning).  The scan was long but pretty uneventful with the exception of my having to pee several times - likely a result of nerves.

The results were back in the next afternoon and we went and picked them up.  I wanted the opportunity to digest the information as well as to research any findings so that I could carry a more intelligent conversation with Dr. Trehan during my follow-up.

PET/CT Results

The PET/CT showed activity in my right vocal cord  - with maximum SUV of 11.4 and no corresponding mass on CT.  There is activity in the 2.4 cm nodule within the right thyroid lobe with a maximum SUV of 7.1.  There is a focal area of activity in my left lateral femoral condyle with maximum SUV of 11.4.  Activity was also seen in both renal masses:  the right kidney has a solid 4.7 cm exophytic mass and the left kidney has a 3.3 cm exophytic mass that is either complex cystic or solid.  (The radiologist conferred with the interventional radiologist who said renal biopsies could be done but they would be risky and challenging - particularly with the right renal mass which would entail a transhepatic approach).

Oncology Update

We met with Dr. Trehan yesterday afternoon.  She said the eye pathology puts me at a Stage 2a.  Now that I have completed the first step of surgery - the next step would normally include adjuvant treatment with either high dose Interferon Alfa 2b or a clinical trial.  Due to my having two cancers and some indeterminate areas (vocal cord, thyroid and femur) - no clinical trials will take me.  The high dose Interferon Alfa 2b is very harsh and would last for a year.  I'm doing research on the Interferon as it pertains to malignant melanoma but at the moment am 99% certain that I will say 'Hell No!'.

Dr. Trehan has ordered a bone scan to determine if the femoral condyle lesion is cancer or just inflammation.  She is referring me to an ENT for the vocal cord and thyroid.  She is also ordering BRAF testing for my eye tumor.  Then we will have another follow up with her in a few weeks.  Dr. Trehan is also not comfortable with renal biopsies - specifically the 'in through the liver' approach mentioned by the interventional radiologist.  Unless something changes in the future - we won't be addressing anything with the kidneys.

The Bottom Line

The bottom line is that I am left with a few weeks to research the hell out of high dose Interferon Alfa 2b and decide whether I want 52 weeks of misery or 52 weeks of bliss.  We also have to determine if the indeterminate things are anything we need to worry about.  I don't particularly relish the thought of having a scope put down the back of my throat while wide awake - so am considering postponing the ENT follow-up.  (The thyroid mass hasn't grown in over 3 years.  The right vocal cord activity could be due to paralysis of the left vocal cord - which could be a result from intubation for my enucleation.  My throat was VERY sore on the left side for almost a week following surgery).  The bone scan is easy enough and will be done on August 4th at Alliance Community Hospital.

So, How Are You - Really?

Twas the Night Before Enucleation

As I have said previously - physically I feel pretty good.  Emotionally - not so much.  While I don't miss Norman - I do miss my left eye.  The evening before surgery I found myself capturing a series of webcam pics of my left eye.  I wanted to remember what I looked like with both eyes.  Norman forever changed my life - and I will never be the same.

Shout, Shout
Let it all out!
These are the things I can do without
Come on!  I'm talking to you.  Come on!
-Shout by Tears for Fears

Too often we cancer patients put on a smile in an effort to keep our pain to ourselves - to not burden others with our fears and sorrow.  Sometimes we just want to shout it from the rooftop:  Cancer - you SUCK!  I HATE you, cancer!  Damn you!  F#%K YOU, cancer!  And so on and so forth.

So - how do you REALLY feel - you may ask.  Well, it's like this:

I feel am disfigured.  One of my most visible organs has been removed.  I can't cover it with a bra, pants or shirt.  I could cover it with an eye patch - but I choose not to out of personal comfort.  When I look in the mirror, I feel like I am looking at a monster.  I have some alien in the body part formerly known as my left eye.  I make it a point to not look into the bathroom mirror unless I am cleaning around that 'eye'.  (And I don't even consider it an eye anymore - it's a barren socket).  When I get up in the morning, I am always mindful to avert my gaze from the dresser mirror.  I just can't bear to look at the person staring back at me.  

I find myself listening to Perfect by Pink. A lot.

Pretty, pretty please, don't you ever, ever feel
Like you're less than - less than perfect
Pretty, pretty please, if you ever, ever feel
Like you're nothing - You are perfect to me!

You're so mean when you talk about yourself
You are wrong
Change the voices in your head
Make them like you instead.

Pretty, pretty please, don't you ever, ever feel
Like you're less than perfect
Pretty, pretty please, if you ever, ever feel
Like you're nothing - You are perfect to me!

I feel so many emotions.  Joy is not lost on me - I feel it throughout each day.  Even though I am in despair - I know where to find comfort when I need it most.  I find comfort in prayer.  I find comfort in the arms of my husband.  I find it in the licks and nuzzles that sweet Faith gives me.  I find it at the bottom of a pint of Haagen-Dazs.  I find it in music.  Even in the darkest, mustiest corridors of cancer - there is joy - if you know how to find it.  If you force yourself to go looking for it - it can be found.

So, physically I am feeling pretty darn good.  Emotionally - not so much.  I allow myself to feel all of my emotions.  That is something I can control.  And when you have cancer - anything that you can control is a bonus.  I laugh and I cry.  I frown and I smile.  I feel joy - and I feel depression.

And then I DANCE it out!!


Day 21 Update - The Swoosh

It's hard to believe that it's been three weeks since my left eye was removed.  Physically I'm feeling pretty darn good.  The only remnants are an empty socket (well, except for the beer-pong-like implant) and a Nike swoosh-like bruise under my eye.

Peek-a-Boo:  I can't see you!!
Trust me, it looks worse than it feels.  And I still haven't gotten used to seeing it in the mirror.  Ok, well, maybe just a little used to it.  The tear ducts are working perfectly - been putting them to good use the past few weeks.  The eye waters a little - and occasionally has a bit of discharge - but nothing overly concerning.

I've been experiencing low-grade fevers, body aches and the associated foggy-headedness every day this week.  I'd wake up in the morning feeling it and before lunch I would just take a couple Tylenol and go to bed for a few hours.  Thankfully today was better.  Being awake all day has precipitated a productive day of work and an evening of loud music (through earbuds) and blogging.  I ate the last of my Haagen-Dazs stash in the freezer and am far too sluggish to hit the recumbent bike.  Perhaps Haagen-Dazs will hear about my plight and grace me with some pity gelato or ice cream.  A girl can dream.....

Pathology Update

It's been two weeks since the enucleation of my left eye.  I have been anxiously awaiting my pathology report from Wills Eye Hospital - now I can finally put a name, cell type and specs to this beast I call 'Norman'.

Norman's Specs:

Diagnosis:  Malignant Melanoma of the Choroid
Tumor Location:  Temporal
Tumor Size:  9.5 mm x 10.5 mm
Largest Basal Diameter:  8 mm
Thickness:  10 mm
Tumor Growth Pattern:  Mushroom
Histological Cell Type:  Spindle B (mostly), Intermediate and Epithelioid (subpopulations)
Mitotic Count (per 40 HPF):  2
Lymphocytic Infiltration:  Few

And for those who actually understand path reports - here is the report in its entirety:

Microscopic Description:

The cornea is unremarkable.  The anterior chamber is deep and the angle is open.  The lens is in place with some sectioning artifact.  Largely amelanotic mushroom-shaped tumor arises temporal to the optic nerve head.  The center of the tumor base is approximately 5 mm temporal to the temporal margin of the optic nerve head.  The base of the tumor where it has contact with the sclera measures about 6.2 mm in diameter.  The mushrooming head of the tumor is approximately 8.2 mm wide.  Elevation of the tumor is 6.2 mm.  Approximately 3/4 of the tumor comprises the mushrooming head anterior to a break in Bruch's membrane.  The base and deeper portion of the mushrooming head are composed by fascicles of spindle B melanoma cells.  The head of the tumor also contains a separate population of cells which appeared less cohesive and have small round nuclei with distinct nucleoli.  These may represent small epithelioid cells that are quite bland.  A few cells with nuclei intermediate between spindle B and epithelioid are noted.  These tend to have prominent nucleoli and peripheral margination of chromatin and are larger.

Only 2 mitotic figures were counted in 40 high power fields.  Rare lymphocytes are seen within the tumor parenchyma.  Vascular mimicry patters are not evident.  The posterior margin of the mushrooming tumor abuts the margin of the optic nerve head detaching the temporal segment of retina and macula.  The overlying perifoveal retina shows extensive cystoid degeneration.  Over part of the tumor apex the outer retinal layers are indistinct and are being infiltrated by tumor cells.  Temporal to the tumor the retina is detached by densely proteinaceous fluid.  The nasal retina is detached artifactually and shows good preservation of its lamellar architecture.  The optic nerve is unremarkable.  A few tumor cells extending to the intrascleral emissarial canal of the long posterior ciliary vessel and nerve but do not reach the epibulbar surface.  The canal invasion is quite minimal.  We see no evidence of extrascleral extension in available sections.

Post-Op Update

Today was my post-op appointment with the surgeon.  She removed the compression dressing and examined the inside of my left eye.  I was thrilled to learn that she inserted the conformer during surgery - so today was a pretty much pain-free appointment.  I was so nervous about seeing my left eye today - but it wasn't nearly as bad as I'd imagined.

The drive to the doctor left me quite queasy - but nothing a Pepsi and bag of chips from the vending machine at her office couldn't cure.  After the compression dressing was removed, I noticed that my nausea mostly went away.  (Yay!).  

Got some good news about my pathology - my eyeball has been sent to Wills Eye Institute in Philadelphia, PA - a facility that is world renowned for their research with Ocular Melanoma.  So, we will not only gain some really helpful pathology information but my tumor can actually be used to possibly help further research in this area.  

After my appointment, we went to see my parents and then hubby and I spent a wonderful day together out and about.  I even drove a bit today.  I am honestly amazed at how good I feel - and how much I am able to do.

Life With One Eye

Wow! Life with one eye is certainly different. I now have the task of training my right eye to do all the work - and it doesn't come without some pain and queasiness. We all tend to take for granted the ability of our eyes to move in symphony with one another. When they removed my left eye, they cut the muscles from it and then attached them to a sphere that takes up the volume that the eyeball left behind. Every time I move my right eye, even the tiniest little bit, my left eye moves as well. Looks like the surgeon did an excellent job of setting me up for a prosthetic that will move in harmony with my right eye.  

I find watching TV to be much easier than sitting at the computer. Trying to play my computer games has been somewhat of a challenge today - but at least now I can use the excuse that Candy Crush Saga is good for training my right eye. I am entertaining myself with mostly comedy - I need to be laughing instead of crying - I can't get my pressure dressing wet.  I'm still using Tylenol for pain - and it is working. I've had headaches that were worse than this. The only pain is from the muscles that are healing - so as with any muscle pain, the more you gently exercise them, the faster they heal and soon the soreness will go away. 

As someone who usually spends much of her day in front of a computer screen - I've found that I need to take frequent breaks in order to keep the nausea in check.  I generally take these breaks on the couch, in front of the television, watching Netflix.  (I seriously doubt there is really an Amish Mafia in Lancaster, PA - we barely sat through one episode as this show was so far-fetched and ridiculous).  

I've been trying a variety of foods but my throat is still so raw from the intubation.  Mashed potatoes and gravy, broccoli and cheese - my tummy wants them but my throat screams 'no'.  I've found cool foods such as tuna fish, cereal with milk, pudding and frozen coffee pops feel much better going down.  

Enucleation Day

This past Thursday (June 26th) was Enucleation Day.  Me and my Cancer Posse arrived at 7am at Vista Surgical Center.  The waiting area was particularly serene with large screen cable television and free Keurig coffee for hubby and my parents.  I was greeted by the surgical staff with smiles and a special sense of compassion.  I also got my Swag Bag - filled with a coffee mug, a stuffed lion and lots of little snacking treats for post-surgery.

I spent the first hour pre-surgery keeping the mood light and sharing my sense of humor.  But by the time I was settled on my gurney and my family was brought back to sit with me - the nerves kicked in big time.  I came face-to-face with the fight or flight instinct - all I could do was just retreat into myself and wish this whole situation away.  Unfortunately, closing my eyes and clicking my heels together didn't whisk me away to that place where cancer doesn't exist.

This was a BIG day for the staff at Vista.  For some of the ladies, they would be witnessing their first enucleation.  For Vista as a whole - including my surgeon - this would be the first time of removing an Ocular Melanoma.  I felt very safe in their hands - and they were comfortable attempting this milestone since there was no reason to believe the cancer had spread outside of my eyeball.  And besides - who doesn't want to be a celebrity for a day?

I've never tolerated surgery well - specifically the anesthesia and narcotic pain meds.  This day was no exception.  The anesthesiologist tried to pull some tricks out of his bag - some Pepcid, Benadryl and Valium offered with a two tablespoon swig of water before surgery - but these only added to the problem of nausea and vomiting afterwards.

The surgery went flawless - and it appeared as though the tumor was still encapsulated in the eyeball.  I was probably in the operating room for less than an hour and discharged in the early afternoon.  I honestly don't remember much until that evening.  I was so profoundly nauseated throughout the rest of the day.

By 11:30pm, I was awake and feeling much better - at least I wasn't as nauseated.  I was able to sit at my computer and entertain myself a bit.  In typical Kristy fashion, all I wanted at this point was a cup of coffee and something to eat.

And there was evening and there was morning - the first day.