Thank you for being a friend...

Yesterday was PET scan day. We showed up...our paperwork didn't. After a few frantic phone calls to confirm that we were, indeed, supposed to be there for a scan, Ken was ushered back to quiet room with recliners and I.V. setups. After waiting for an hour (to allow the I.V. to deposit it's contents throughout his body), he was taken in for the scan. It went off without a hitch. Results should be available Wednesday at his appointment(s) with the oncologists. Hopefully, there will not be anything additional to deal with outside of Ken's current diagnosis.

We want to take this opportunity to thank each and every one of you for your many good thoughts, prayers, cards, food deliveries, puzzle books, movies, balloons, survivor pins, and so much more. While we can't necessarily list everyone by name in this venue, we do want to take a moment for a special shout out to Kurt and his plans for a Benefit to honor Ken this spring. We have been very blessed to have felt your friendship on so many levels, and we really appreciate y'all being there for us.

Tomorrow starts early and goes all day. Thursday is the feeding PEG insertion (again, early!!). Our marathon begins in earnest very, very soon.

Thanks yet again,
Paula

"We're calling to confirm Ken's appointment for...

Ken's first appointment at the Cancer Center

I thought y'all would like to see a picture of  what an average day looks like at one of our many appointments. Lots of waiting...

This picture was taken at Ken's very first appointment at the Cancer Center in Salisbury, MD where he will be undergoing his radiation and chemo treatments. The offices are quite amazing and maze-like. The staff seems to be very caring and professional. The PET scan and feeding tube insertion will be done at different facilities, but, virtually everything else, will take place here.

But, until we get the final treatment plan calendar, we wait...
                                                                     

Dental appointment, take two...

The sun is shining, the air is crisp, and it's time for us to go back to the dentist to complete the work that began a week ago. We are crossing our fingers that the UPS guy arrives with the crown prior to our appointment (or we will have to put this off for another day).

The doctor's office called yesterday to set up the appointment for Ken to have his feeding tube(peg) inserted. He'll have it done the day after he has the appointment with the medical oncologist, more blood work, and his CT simulation (Thurs., Feb.2). Happy to finally have the date and really hope this is the end of any and all tests, poking, and prodding before treatment begins. We are getting more than a little antsy for things to get rolling. It's kind of difficult to be told how aggressive the cancer is, and then say it's going to be a month before treatment starts. All we want to do is KILL THE CANCER...NOW!!!

The boys were able to have a nice day together yesterday. After a quick lunch, they headed to a movie matinee (Sherlock Holmes), and went to get their hair cut. Seems like it is getting difficult to have any downtime to just relax and talk and joke around. We grab every moment we can, now, and hope you do the same. Time spent with people you love is irretrievable, yet completely memorable. Gotta make those memories!! Geez, I am sounding like a greeting card...must not be completely awake.
Paula

"Why is the laundry room under water?"

Good Morning!
Ken came home from work Friday night, and wasn't feeling great. Sometimes it's hard to figure out whether he's tired, or the thyroid meds need adjustment, or it's something entirely different. Since he felt better Saturday, I guess he was simply tired. Of course, Saturday morning began with the question as to why the water was overtaking the laundry room?? The day quickly became about enabling the boys to get their showers while I bailed water from the ever increasing torrent coming from our hot water heater. A call to the landlord (who is very good, by the way), gave hope that a plumber would be coming soon. I turned the water off, bailed the remaining water, and cleaned up the mess after the guys headed to work. The plumber(s) arrived and said the new water heater wouldn't be available until Monday...WHAT????
No, we didn't have to be without hot water for the weekend. After a tutorial about the workings of hot water heaters, a suggestion was made that perhaps it didn't need replacing so much as repairing the signal box. Was that part available?? Yes!! The second plumber (the initial plumber's father), arrived with part in hand. As of this morning, we are still high, dry, and very relieved. So, anyone out there praying that we would experience some diversion to take our minds off of the upcoming treatment plan...please, stop! Or, suggest a more positive experience this time, ok?

We will consider this our humorous episode for the week...
Paula

More to the dental than we thought...

Ken's dental appointment was really great, as far as having a clean bill of health for any other cancers (mouth, tongue), however, he had a small cavity beneath a crown that needed to be taken care of before his radiation starts. I think my heart literally skipped a beat when they said, "It'll be another thousand dollars". OK. So yesterday, back to the dentist for phase one of the new crown fitting. Hopefully, if the lab follows through like they promised, and the UPS guy isn't late, we'll finish this up next Wednesday. We still do not have a date for the feeding tube placement, but I hope to hear from them today.

Another round of paperwork is staring me in the face this morning. While it would be REALLY nice for me to have the income from a job, I don't see how in the world we could keep up with the appointments, paperwork, pharmacy runs, food preparation, and everything else that cancer brings to bear, without the extra time it takes to handle all this stuff. I am grateful that Ken is able to concentrate on getting himself well, and doesn't have to mess around with the peripheral nonsense. God bless all the cancer patients that have to go through their struggle by themselves. God bless them all, period!

Ken is already planning on taking part in a cancer walk, when he is well...gotta love it!!! Chin's up, everyone.
Hope and humor rule the day...

Another day, another doctor...

The consult with our medical oncologist went well. She is very good and her staff is hilarious. It has been determined that Ken will, indeed, require chemo as well as radiation to really get the most bang for our buck. There were several scenarios from which to choose, and Ken has decided that a once a week IV dosing is the way to go. It will take about half the day to deliver, however the dosage will be somewhat less, so more easily tolerated. The chemo will begin along with the radiation and run about the same period of time.

We will try to get the appointment for the feeding tube insertion in between the PET scan, and the medical oncologist final plan/blood work appointment and the radiation simulation appointment the end of January. So many appointments, so little time!

This morning Ken will have his dentist visit to make his fluoride trays, get an complete exam, and have a cleaning. (Would someone explain to me why dental work ordered by a doctor is NOT considered a medical expense by health insurance????)

Anyway, Ken is taking it all in stride, and cracking jokes, as usual. The paperwork mounts. Kind of surprised that a medical/cancer center that is all computerized to allow for easy access to all records still requires a whole new set of paperwork each and every time you enter the building. How many copies of medications, family histories, etc., are really necessary for one patient?? I guess we should be very grateful that we don't have to travel between appointments (except for the dentist, the PET scan, the feeding tube insertion...).

After today, we should have a little down time to contemplate our navels and eat  bon bons. Gotta keep shoveling on the weight, right? (Yes, Ken has been putting on a few pounds!! Yay!)

Jess has a buddy from PA coming tonight to hang out for a couple days. Glad he will get a little well-earned diversion. He's been a rock and we are so grateful to have him here!

Alright, enough already...time to head to the next appointment. Hope your day is wonderful with splashes of humor and joy.
Paula

Thoughts...

Tomorrow we meet with our medical oncologist to discuss the possibility of chemo being added to the upcoming treatment plan. The paperwork has now been completed, and we wait...

I want to take a moment to thank everyone for their care and emotional support towards Ken and our family. Please feel free to continue to follow along as we begin our journey. We have the utmost faith and hope that Ken's outcome will be great! Don't be shy about posting as a "follower", as this is a really wonderful way for us to be aware of the time you have graciously given from your day to check in on us. Believe me when I say, "We are grateful to you, each and every one".

Thanks...

The waiting game

Ken returned to work yesterday. He hopes to be able to continue until his treatment plan begins in early February. Sitting at home, not feeling he's contributing (ridiculous!), has really been driving him crazy. The effects of cabin fever were becoming detrimental to a more positive outlook, so he got cleared to return to work. While I am not all that thrilled with the prospect of germs and overexertion entering the picture, Ken has assured me that he will not over do it, and will use LOTS of hand sanitizer.

Keeping lots of high-fat, home cooked meals at the ready has become a very important component of my daily routine.We need to get some extra weight on Ken now, before the fun begins, and he can be kind of picky as to what he thinks he'd be willing to eat. However, while attempting to throw one meal in the crock pot while preparing another stove top, and answering phone calls, and filling out paperwork...well, let's just say that the crock pot meal doesn't necessarily cook real well while the setting is on KEEP WARM instead of LOW. Geez! I guess I provided the comic relief for the day, right? Gotta keep the humor...

The whole story...

It all started with laryngitis back in October, 2011. Everybody and their brother had laryngitis, and we thought it would pass. Within a couple weeks, when  Ken's voice hadn't improved, he went to a local walk-in clinic where he was diagnosed with a sinus infection and given a five-day course of antibiotics. Another ten days passed, and we decided that perhaps a visit to an ENT was in order. Thus began the journey through many, many assorted thoughts as to a diagnosis. Ken was sent for blood work-ups, CT's with contrast, endured many endoscopes in office, and finally the diagnosis that he had a thyroid cancer was made. So, we were sent for additional pre-op studies to prepare for a partial thyroidectomy to be followed by some iodine a few weeks later which would clear up any remaining cells that were still hanging around.

Surgery was on December 30, 2011. It went longer than anticipated. At the conclusion of the surgery, the doctor came out and said that he had done a total thyroidectomy, and had a frozen section done during the procedure. The cells did not look like any of the four "routine" thyroid cancer cells he had anticipated dealing with. He had never seen the kind of cells they found in Ken's thyroid. Whoopee! Ken's unique. I took Ken home from the hospital on December 31, 2011. We would have to wait until the doctor's post op check up to see what the pathology report said, and decide what the next step would be.

Ken was diagnosed with Basaloid Squamous Cell cancer, which was now thought to originate in the larynx, and not the thyroid. Ken's previous tests had shown nothing extraneous in the chest or neck or lymph nodes. These are all good things. Now, we had to set up the appointment with a Radiation Oncologist to set a course of treatment to try to eradicate the cancer in the larynx while attempting to save the organ and fore go further surgical intervention. The appointment with the doctor went well, the facility is great, the treatment will be difficult but not impossible. Ken will also be meeting with a Medical Oncologist on Jan. 16 to discuss the possibility of adding some chemo to the mix. Anyway, we are now in a holding pattern until Jan.30th, when Ken will have a PET Scan to determine if there is anything else hiding anywhere. We have to wait because his surgery site from the thyroidectomy has to heal so as not to give any false positives during the scan, and to make sure that no additional damage is done during treatment.

So, at this point we know that there will be a radiation treatment plan involving 35 days of treatment (Monday through Friday for seven weeks), after which we will see what we will see. We don't know about the chemo yet, but will keep you posted.

Please know that Ken is a fighter. Everyone that knows him is already aware of this fact. Jess and I will be with him every step of the way, and will do our very best to keep him comfortable and strong. The doctor will be putting in a feeding tube prior to the onset of treatment as a safety measure...we're hoping this will not have to be utilized, however, his ability to swallow may be compromised and we want to take no chances as things progress. At some point, Ken will not be able to use the phone, so text-messaging or calls through me would be the way to go.

Continue to remember us in your thoughts and prayers as we head toward the unknown with as much faith and hope as we can muster. We really appreciate all the support and love heading our way. Be strong! Live long! Carry on! Fight!!!!!!!!!!!! This will be our mantra...

Let the games begin...

I haven't posted for a couple days because the onslaught of paperwork and appointments has already kicked my butt. No, it hasn't got me on the ropes yet, but it definitely takes lots and lots of time to make sure everything is checked and double checked as we move forward. Finding out that we have not one, but two oncologists as well as the need for a dental appointment to get fluoride trays made was somewhat surprising. Also, our "start date" being moved out was somewhat startling. The decision of whether it's best for my sweet patient to return to work for a couple weeks to attempt to reset his leave time is another question we will attempt to deal with today.  Coming to terms with what is ahead (inclusive of, but not limited to, adding a feeding tube prior to radiation treatments, getting fitted for the tattooed superhero mask, the treatment trial runs, and dealing with a mild case of claustrophobia), all add to the fun. Seriously, it's almost the antithesis of preparing for childbirth. The trade-off is NOT wanting to bring a little bundle home from the hospital when all is said and done. Thus far, we have found that humor will need to be a major coping mechanism. For example, "Hey, honey. At least I won't have to invest in a Halloween mask this year."

If  I could take this awful short-term future away from my husband, you gotta know I would!! Every time I say "we", it is really "he" that has to deal with the harsh realities to come. All I can really do is be present and observe. Not a fair deal, in my estimation. "We" will play the hand we've been dealt and kick this thing to kingdom come and look forward to a springtime renewal of hope.  Wish us luck...we're off!

Post doctor visit and pathology report

So, we met with the surgeon's PA yesterday, and got the lowdown on the true nature of the cancer we're dealing with. Let's just say it's not pretty. Appointment with oncologist for radiation/chemo set for Tuesday. While the normal way of dealing with this type of cancer is the surgery, it appears that my wonderful husband has some unusual type/deviation, which is something not nearly as easily dismissed.

The hardest part of this whole thing is that the patient in question is possibly the most kind, engaging, thoughtful, handsome, beloved guy on the planet. You know that bad things happen to good people, but it should NOT happen to someone like him! Ever!!

Now, the fight begins. Unfortunately, our financial resources will make it much more difficult to maintain the standard of healthcare necessary to have a strong chance of beating this thing.

We thought 2011 was bad...

Like so many other people, we have been hit by the Big C, and it just seems so overwhelming. The concept of putting your life on hold, and believing whatever you are told by people you don't even know (like doctors, technicians, etc.) is very hard to take. This is made especially difficult when you are used to taking the bull by the horns and handling crap as it arises! While the idea that living a day at a time is the appropriate action to take, it seems almost too passive to be beneficial. While blogging is something new to us, it just seems that maybe keeping track of the events both past and future may, in some small measure, be helpful in giving clarity to what's happening both for us and for our friends and family. We will attempt to keep track of what's happening via this blog...at least for awhile. Doctor this a.m. for pathology report. Stay tuned...