The fight continues!

Hello Everybody!  As much as I hate to bring the blog back I feel like I need to update everybody about what has been going on.  Sorry that I haven't been updating but it is so easy to forget about things when everything is going well.  My 3 month post surgery scans in June were clear!  Billy and I had an AMAZING summer and we got to travel all over the place!  We made a road trip to NY for Pete's graduation with a stop in Salisbury, Maryland (where I was born) and Ocean City, Maryland.  We also went to Chicago, Atlanta, Denver, and made more trips to Folly Beach than I can count! 

I had my next round of scans on Thursday, September 8th and they found two small spots on my liver.  I had a PET scan last Friday (which is a full body scan) and they said there are actually three small spots on my liver and a spot on my right gluteus maximus, which they believe to be melanoma. 

I have been meeting and talking regularly with my oncologist in Charleston trying to figure out a treatment plan.  My oncologist has been in contact with a doctor in Philly (Dr. Sato) who is thought to be the leading doctor for treating ocular melanoma.  He has reviewed all of my scans and they are exploring several different treatment options as we speak.  Right now we are just waiting for an update on where to go and what to do.  I have told the doctors that they just need to tell me where to go and I will be there.  Right now my options include a new drug called Yervoy, a radioembolization treatment (http://www.sirtex.com/, and an immunoembolization called TIL (tumor infiltrating lymphocytes).  I am very anxious to get things started but I'm not getting overly worried about it.  I KNOW that the third time is a charm and after we knock this out everything is going to be gone for good!

I honestly couldn't ask for a better support system during all of this!  As I write this Billy is reading over my shoulder and my Mom is in town to help out with everything!  I have been flooded with emails and phone calls sending prayers and positive thoughts my way.  I appreciate it all so much and please keep them coming!  All I ask is that you please say a prayer to rid me of this melanoma once and for all!

Love, Kenan

as of lately

Sorry it has been so long since we have updated the blog.  It was the highlight of our day to update this blog when we were in the hospital but now that we are back home it has been hard to keep up with it.  My apologies :)   I wanted to give everybody an update on where I stand...

We recently went back up to Dook to meet with the oncologist and surgeon.  Both appointments were rather uneventful.  On May 9th we met with the oncologist and she just told me I needed to make an appointment with an oncologist in Charleston who specializes in melanoma so he/she could schedule my next round of scans.  Since ocular melanoma is so rare there is very little research out there for how to prevent it from coming back.  Therefore, they will not do any chemo or radiation.  Instead, I will get frequent PET scans to make sure that it doesn't spread anywhere.  They hope that with the recent surgery they were able to remove it all from my body and keep it from coming back! 

Thanks to the help of my dear friend, Nurse Emily Spears, I was able to speak with a doctor at MUSC who recommended an oncologist at Hollings Cancer Center.  I meet with him tomorrow, May 25th!  I am excited to meet with him and hope that we get along well since we will be seeing a lot of each other over the next few years.

On May 10th we met with the surgeon and he checked out my incision. He said it looked great, and I must say that I agree! He also went over the pathology report with us and said that they were able to remove all of the melanoma lesion from my liver!  He also released me to go back to work on June 1st.  I have been doing some light exercise and most importantly, I was well enough to be in my friend Elizabeth's wedding 2 weeks ago.  I also got to go to NY to see Pete graduate from West Point!  I told the doctors from the start there was NO way I was going to miss those two events and I am so thankful that I healed so quickly!

I should have my scans done this week or early next week and I will be sure to update with the results.  Fingers crossed!


Attached is a pic of Billy and I with the handsome graduate.  So proud!

Back home in Charleston

We made it back to Charleston and I have been recovering very well!  My Mom and Billy both have spring break this week so they are in town taking care of me!  It so good to be out of that hospital and back at home.  I have been getting out a little bit each day and even working from home some.  Once the doctor gives me clearance I am ready to get back to work and get things back to "normal."  Thanks so much for following the blog during all of this.  All of your support has meant so much to me! 

We go back up to Dook on May 9th to meet with the oncologist.  She will schedule my next round of scans to make sure everything is gone.  Dr. Salama is also working on finding me an oncologist in Charleston so that I do not have to keep traveling up to Dook for visits.  On May 10th we meet with the surgeon, Dr. Clarey, to check out my incision and make sure everything is healing according to schedule.

Packing it up!

We have had the doctors come by this morning at 5:30 and confirm that we are getting out of here around 11 AM!!  The doctors are writing the orders as we speak of what Kenan should and shouldn't be doing over the next 2-3 months.  We have had a couple nurses say they are sad to see us go.  Unfortunately I cannot agree with any of them.  We are ready to get out ASAP!! 

They will be writing a couple scripts for pain medicine and maybe other medications.  We have our post op appointment set up for May 10th to meet with the surgeon to see how her progress is going.  We will also set up an appointment with the medical oncologist for May 9th to knock out two appointments in one trip. 

The plan for the next couple days is to drive to Charlotte after being discharged to go shopping :).  Kenan is ready to find her tankini!!  She is ready to get back out in the "real world" instead of getting a play by play of what I do when I'm not in the hospital.  We are planning on heading back to Charleston on Saturday but we don't want to rush anything.  We'll see how the road trip goes today and play it by ear.  Thank you everyone for your prayers and thoughts through this past week.  It has really helped make the past week go by as fast as possible. 

We can't wait to see our baby (Thanks Uncle Bill)!

Day 7 - almost free!!

Hey Everybody!  Today is Day 7 and we are all starting to go stir crazy in this little hospital room!  I have read all of my magazines, watched all of the bad TBS sitcoms I can stand, and taken as many naps as humanly possible.  Mom and Billy have been taking turns getting out for a while each day, and have also both developed an Angry Birds addiction.  Billy went to meet Drutar for dinner at Mellow Mushroom in Durham last night and I made him recreate the entire dinner for me.  I felt so silly but it seems like it has been forever since I have been out and interacting with people in a non-hospital situation.  I can't wait to bust out of this place!

The doctors came with good news this morning!  Hopefully I will get released tomorrow!  Mom and Billy are packing all of the bags and loading them in the car as I write this so we can jump on the road to Charlotte as soon as they let us.  They gave me SOLID foods for the first time this morning and took me off of my IV!  I am taking my pain meds orally now and, as long as everything goes well, we will be on schedule to get out tomorrow.  It feels so amazing not to be connected to that IV machine 24/7.

Now, off for one of my daily walks around the hospital!

Day 6 - DOCTOR'S HUMOR

Hi all,

Thanks for taking the time to check in on Kenan and Billy.  Kenan, Billy, and I have lost all concept of the days of the week.  We are measuring our days by the nurse/doctor visits, delivery of the food trays, and shift changes.

A the moment, Billy has gone to the MALL.  I know, shouldn't I have written Kenan has gone to the Mall?  Billy has gone to the Mall to pick up some items for Kenan at her request and no, he hasn't gone to pick up a tankini.

Kenan is napping at the moment.  She has had a busy morning.  The usual, she showered, drank more clear liquids, and walked.

Last night around 9:00 pm we were surprised by a visit from Dr. Clary, her chief surgeon.  We had not talked with him since last Thursday.  It was a good conversation.  He came in, sat down beside Billy (all other doctors and nurses stand) and visited for a while.  He told Kenan that she is progressing fine.  All tests look good and her recovery is on track.  He discussed her next goals toward recovery and said just a few more hurdles and then she should be able to go home.  She will come back for a follow up visit approximately 2 weeks from her release date.

Too my surprise, Dr Clary said oh, I received a picture of the happenings in your room over the weekend.  He pulled out his blackberry and started searching for "a picture"?  I was very surprised and asked him how he had a picture?  He replied, "Oh I have my sources".  We waited in anticipation, while Dr. Clary searched.  Soon, he showed us a picture of Catherine and Brian dressed in their "Team Kenan" T-shirts.  Brian showing the front of the shirt, Team Kenan and Catherine, showing the back of the t-shirt, half a liver is still a whole lot of fun.  Dr. Clary was happy to report to Kenan that she would soon need to have her friends make new shirts.  He reminded her that she will soon have more than half a liver again.  You all should have been here, oh my gosh, what a long way Kenan has come from her first visit with Dr. Clary.

Not sure which of Kenan’s friends gets the credit for bringing the Justin Bieber door poster, but it is quite the conversation piece.  Everyone and I mean everyone, comments about the poster.

We are anxiously awaiting a release date from the hospital, but nothing to report at this time.  We anticipate Kenan being able to eat solid foods for dinner.  Not sure what she will request, but solid food is a huge step forward!

Thanks to Dottie (my sister's best friend) and her husband, David, for their visit Sunday.  Dottie and David have watched Kenan grow up and they are part of our extended family.  Loved the visit from Bonita (Kenan's second cousin) and her husband David.  Billy and I have enjoyed the gift basket contents from both couples.  Kenan is still waiting. 

Kenan says thanks to Granny Burke, Aunt Jane, Uncle Dean, cousins Michelle, Jill and Aaron, Granddaddy, and Grandmama, and Aunt Karen for their every other day visits.  It is a great comfort to be so close to family and Kenan really appreciates your visits and love. 

Posted Kenan’s Mom

     

Day 5 - Online Shopping & Facebook

I have been trying to get Kenan to write her own blog.  I haven't been able to pull the computer away from Kenan (thatis why the postings have been slacking off).  Kenan has been up since 4am (I couldn't stay up anymore) shopping for tankini's and catching up on facebook.  She is ready to "break out"! 

We have been going to the cafeteria on a daily basis to get unsweet tea and grapes (can't keep the grapes down).  She has tried yogurt and coffee this morning to get something in her stomach.  Nurse Nancy gave us a little attitude after hearing that she had grapes, reminding us that she is on a liquid diet.  Of course we threw our prior nurse under the bus for telling us to "just try it". 

We have a new favorite nurse "Jenn" (must be the name) and she has only been here an hour!  Funny how it doesn't take much to beat the other nurses.  We are going for a walk and then Kenan wants to paint her fingernails (thanks Liz and Emily)!  Keep posted for painted fingernails.