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.

Stress Test Update


As a result of my chest pain and borderline EKG - I underwent a Lexiscan Stress Test with Myocardial Perfusion Imaging over the course of Thursday and Friday.

Thursday was easy - I just had to show up at the hospital at 1pm for imaging.  This consisted of a medical history intake and consent for testing, IV insertion and radionuclide injection {28.6 mCi of Sestamibi (Technetium/Tc-99m)} followed by lying still on a table for about 20 minutes as the machine scanned images of my heart at rest.  I actually fell asleep during the scan.

Friday was a little more intense.  We arrived at the hospital by 9am where I had a second IV port inserted and then had a Lexiscan stress test.  Lexiscan is a medication that chemically stresses the heart similar to walking the treadmill or riding a stationary bicycle.  The Lexiscan was injected into my IV port over the course of 10 seconds and it's greatest effects (shortness of breath) lasted about 2 minutes.  I also experienced some numbness in my feet (lasted about a minute), nausea (lasted over 5 minutes) and a headache (lasted for over a half hour).  Another dose of radionuclide was injected after the Lexiscan (30.6 mCi of Sestamibi).  Since fasting was required (nothing by mouth after midnight except water - and no caffeine for 24 hours), I was elated when they handed me a handful of saltine cracker packets and a cup of cola to nurse my headache and nausea while waiting for my final scan.

Afterwards I came home, ate lunch, took some Tylenol with a strong coffee chaser and fell into bed for a few hours.  I was cautioned to rest for the remainder of the day.  I was also given a card to keep on me for a few days since my radioactivity would likely set off scanners at airports, courthouses, etc.  While the prospect of testing out my new 'hotness' intrigued me - I really didn't feel up to doing much beyond sitting in front of my computer or napping in bed.

My results were ready to pick up that evening.  My resting blood pressure was 94/53 and resting heart rate was 68.  My peak blood pressure was 108/66 and peak heart rate was 109.  The results stated there was no evidence for significant stress induced ischemia.

Pre-Op Update


'Norman' isn't going down without a fight.  With each passing day I have become more agitated and nervous about surgery, Norman is acting out and the stress is beginning to affect my health.  I've experienced headaches on the right side of my head (from around the eye back to the base of my skull) for a number of years.  They can last up to a few days and have increased in frequency.  If Norman's demise and a little time adjusting to monocular vision doesn't take care of the issue then I have no choice but to go to a Neurologist.  Now my left eye is chiming in and Norman wants some attention - over the past week I have developed a mild headache around my left eye - and the eyeball is a little sore when I look to the side or upward.

The big monkey wrench that has been thrown into our surgery plan is a new episode of chest pain.  I began having pinchy twinges in the center of my chest about 10 days ago.  They are short lived - a few seconds - and come back with no predictable frequency.  Then, Tuesday morning around 4am I had chest pain that woke me out of a sound sleep - a burning pain that radiated from the center of my chest into my lower jaw, left ear and left sinus.  The pain subsided after about 5-10 minutes and I passed out into a peaceful slumber.  When I got up a couple hours later I told hubby of my adventures in chest pain and called our family doctor.  Since Dr. Sh couldn't see me until this morning, I opted to go to the emergency room since I had a slight heaviness in my chest and was a bit short of breath.

The ER doc can best be described as Chuckles the Clown on espresso, sweetened with just a pinch of methamphetamine.  He was nice enough but extremely hyper and didn't really give me a chance to describe my symptoms.  He did the usual battery of cardiac testing (EKG, chest x-ray and cardiac enzymes) and then ordered me a GI cocktail while we waited for the results.  The GI cocktail didn't do anything but leave a crazy taste in my mouth and numb my gums and throat for a bit.  Chuckles assumed 'problem solved' - but he assumed wrong.  He said my EKG was normal, cardiac enzymes were good and sent me on my way with a possible diagnosis of Gastritis.  (The classic treat 'em and street 'em approach).

I had a follow-up appointment this morning with our family doctor, Dr. Sh, because of my adventures in chest pain.  He reviewed yesterday's EKG with the EKG that he took a couple weeks ago and determined that something wasn't right.  It turns out my EKG from the ER was abnormal and showed T-wave abnormalities.  (Dr. Sh completely disagreed with the Gastritis diagnosis from Chuckles).  Dr. Sh said we need to get a stress test before I can proceed with surgery.  He sent the EKG copies to a local Cardiologist for review (insurance required this in order to pre-authorize a stress test) and a 2-day stress test has been scheduled for this week.  Tomorrow I get the joy of being injected with isotopes and have a glamour shots session of my heart.  Friday will be the 'chemical' stress test since no one feels confident in putting the 295 lb cancer ridden chic on a treadmill.  (Apparently I've dropped 10 pounds in the past couple weeks with no effort whatsoever.  I guess the Cancer Diet is working).


Then this afternoon I had my pre-op appointment with Dr. B - my eye surgeon.  Dr. B is so cool - and she reminds me of Dr. Erica Hahn from Grey's Anatomy (but a lot less pensive).  She answered all my questions and put me at such ease about this surgery.  I will have a pressure dressing in place for about 4 days - after which, I don't have to wear a patch if I don't want to.  I find patches to be uncomfortable - but at least I am blessed to have a few just in case.  I plan on wearing sunglasses when we go out - and if anyone gets snippy with me because I accidentally plow into them with my electric shopping cart in Walmart - I will just drop the glasses enough for them to see my pink socket :)


I was informed today that I am their celebrity patient - I am only the second patient with Ocular Melanoma that they have seen.  The girls are all fighting over who gets to scrub in for my enucleation.  I told Dr. B that we should just make it a party - the more the merrier.  And since she is getting to remove Norman, the least she could do is gift me with a Swag Bag afterwards for my troubles.

Dr. B gave me something fun to obsess over - I get to draw anything I want around my left eye (the one being removed) in permanent marker before arriving for surgery.  This will encourage everyone to remove the correct eye.  (Oh that would suck if someone accidentally removed my right eye.  Dr. B said she would end up in the crazy house if she did that to me - I told her, yes, but you would also be paying my bills for the rest of my life as well.  And then we both sort of chuckled.  Sort of).  So, hubby and I are working on our 'design' for my left eye.  I'm thinking something along the lines of Bates Motel :)



  

Letting Yourself Go - Or - Letting God

Two months ago today I was diagnosed with choroidal melanoma (OM) - and our beloved furbaby Annie became an angel.  The past two months have been very overwhelming.  I've really been struggling with my diagnosis and my impending enucleation in a couple weeks.  I have found myself feeling depressed and withdrawn.  I've been praying, eating pints of Ben & Jerry's, working, eating pints of Haagen-Dazs Gelato and essentially throwing a not-so-fun pity party for myself.  I haven't felt like doing the things I enjoy - like blogging, socializing online or listening to music.  I've been living in my own little bubble - behind my desk and in front of my two computers - working and watching a marathon of The Secret Life of the American Teenager.  After choosing to Dance It Out instead of a nap this afternoon, I felt a certain sense of joy that just hasn't been there for awhile.


I do NOT instantly feel better about the road I am walking and the journey ahead - but I am dealing with it as best I can.  

In early 2008 I was given a prognosis of a year - maybe two - for my kidney cancer.  I weighed 235lbs at diagnosis - 265lbs in October 2010 when I quit smoking - and am now tipping the scales at 300lbs.  I'm like any other fat girl - I make excuses:  The steroids in the Kenalog allergy shots that I have gotten most every year for over 20 years.  That I am genetically predisposed to obesity through my biological mother's side of the family.  I might as well eat, drink and be merry - I have two cancers and one of them is bound to kill me.  The list goes on and on and on.

Twenty one years ago I was blessed to meet and begin sharing my life with a very special man - my husband.  No matter what I look like - no matter how much weight I have gained - he still tells me that I am beautiful and that he loves me.  He never makes comments about my weight - and is always supportive no matter what choices I make.  He supports me when I say I am going to exercise.  He supports me when I curl up with a pint of gelato or a BIG bowl of cereal.  He loves me unconditionally.  And that is what helps a soon-to-be one-eyed, overweight girl who only has 15 teeth left in her mouth.

Losing my eye in a couple weeks is already shaking up my already rocky self image.

That said, I have a very strong faith in God and know that my self worth does not hinge on things such as weight, scars, missing organs (or teeth), etc.  I also know that the only one who can change anything about my appearance is me.  I plan on fighting this ocular melanoma with every fiber of my being - and I plan to do the same thing with my weight.  I want to take my life back - because I don't know how much of it I have left (none of us know - life is fragile like that) and I want my energy and stamina back.

I love my job (sitting in front of a computer all day) - but I want to also be able to get out of the house and make memories with my husband (as well as the rest of my family).  I want to go for walks with my husband (especially if we make it to the bucket-list ocean destination).  I want to be able to run around and chase my grandchildren.  I want to be able to meet Dad for coffee and not have to sit at a table that has a chair because I can't comfortably fit into a booth.  I want to be able to have the stamina to take another nature walk with Mom this fall.  I want to be able to enjoy a variety of activities like I did when I was younger - and not so overweight.

My plan is pretty simple.  I charge up the Zen Stone, crank up the volume as loud as it will go and ride our recumbent bike as far as I possibly can.  I start my bike ride with Be Careful by Rogelio Douglas Jr. followed by some other favorites like Scream by Usher, Jump (Super Cat Mix) by Kriss Kross and Akon's One More Time (Wake Up Call).  Then I follow this with my own little version of Zumba - quite similar to the dance party that Meredith and Cristina used to do on Grey's Anatomy.




I'm choosing to Let Go & Let God.  He will do his part - but I am also responsible for doing my part.  None of us are promised tomorrow.  Our days are numbered when we are born and though we hope for a long life, that isn't always the way things go.  Even if I don't lose much weight - and even if I don't live as long as I'd like to - at least I will have some extra energy and stamina for awhile.  And not unlike Callie from Grey's Anatomy - I had forgotten how much I missed dancing around the house.  My fat girl dance moves may not be pretty - but they sure are FUN!



One More Time (Wake Up Call)
by Akon

What if you never see tomorrow again
And it's the last party that you attend
Live it up like it's 3010
What if this was the end?

So invite all your family and friends
Cuz they should be here celebrating
Let's make the best of this time that we spend
Cuz if this is the end I want you to....

....Live like you don't plan to wake up.


Oncology Updates

The month of May was a whirlwind of appointments.  At my last visit, my Oncologist had ordered a PET/CT scan as well as a Brain MRI.  Our insurance wouldn't cover the PET scan without a pathology report - so it was cancelled.  The Brain MRI went as smoothly as can be expected.  I've never considered myself to be claustrophobic - but apparently I have some of those hidden tendencies.  I can't tell you how many times I wanted to scream and just walk away from the test.  (For those who haven't had an MRI - it isn't painful, just loud and very close quarters in there).  The upside of MRI versus CT scan was that I could eat and drink leading up to the test.  The downside was having a cage over my face, my eyes closed and a very loud ruckus going on around me for 45 minutes.

The MRI results showed a 1cm (10mm) tumor in my left eye as well as a 3.8mm cystic microadenoma or pars intermedia cyst in my pituitary gland.  There were also several FLAIR hyperintensities noted in the white matter on both sides.  A one year follow-up MRI is suggested.

Today was my second oncology visit.  The plan is to have the left eye removed and then a PET/CT scan after the pathology report is back followed by a visit back to the Oncologist in mid-July.  At that time we will learn if I am high risk (or have metastases) and need to start chemo.  OM is similar to kidney cancer in that it doesn't respond to traditional chemotherapy.  The treatment options are few but the Oncologist did mention immunotherapies such as Interferon Alpha and Ipilimumab (YERVOY).

I am still waiting for an appointment with the Genetics doctor.  I may also take up the Oncologists offer for a referral to a Neurologist if the headaches and phantom smells/tastes don't subside after surgery.