just a quick update...

Well, I'm still off work. I was supposed to go back this past Monday, but the tongue still hurts too much. You know how your tongue feels when you burn it. Well, multiply that by about 1000 and that is how my tongue feel. Add on top of that, the fact that I still drool like a baby that is teething and I sound like I have a mouth full of marbles and you can see why Doc Williams gave me another week off. On the plus side, the swelling in my tongue has gone down considerably. Hopefully, I'll be able to go back next Monday.

My diet is getting better. I can now eat sandwiches! YAY! I can add p.b.&j sammiches to my cream of chicken soup. Still have a couple of issues; 1) anything too cold still hurts to drink 2) now that I have this new "space" in my mouth, all the food seems to want to congregate there. In order to get it out, I have to use water to get it out. So, b/c of these two things I am definitely well hydrated. lol...

That's it for now. More updates as they happen...

An open letter to GBMC

3-20-10

K B

Cockeysville, MD 21030

To Whom it may concern:

I wanted to take some time to let some one know about the quality of care my family has received over the past year at Greater Baltimore Medical Center.

Our contact with GBMC began in earnest in June of 2009, when I presented in your Emergency Department on June 5^th with what ended up being 2 blood clots in my lungs, and I was admitted to Unit 34. While no one can honestly say they enjoy being in the hospital, your staff did everything they could to make my stay as comfortable as possible. I cannot possibly say enough good things about a nurse named Jackie, in particular. I apologize for not remembering her last name, but I do believe it began with a B. She worked the 7 p.m. to 7 a.m. shift and she was positively amazing. I would love to know that she got some sort of recognition for the kind and level of care she provides to your patients.

I was released on June 9^th, to turn around and come back the following day for my husband to have a biopsy performed on a mass in his tongue. Thus began the “adventure” we’ve been living ever since. He was diagnosed with oral cancer on June 15^th, and we returned to Sherwood Surgical on the 26^th for the surgery to remove the tumor and excise some lymph nodes for biopsy….

I wish I could remember everyone’s name whom we have had contact with in your facility, because if we’ve met 50 people in the course of the care, there are less than 5 whom I would say don’t deserve special recognition. I think some of the nurses we had last year are the same as we’ve had in this last month.

The Pre-op nurses are so personable and roll with very bad jokes along with us, trying to put everyone at ease before my husband Ken’s surgeries. They joke with us, explain things thoroughly, and answer any and every question we come up with. In Post op, again, Ken receives wonderful care. His most recent care team consisted of Joyce M., Kathy R., (OR) Lynne T., PACU; and it looks like another Joyce, in PACU as well. In addition to Vanisha and Nancy, and a few other’s whose names I did not manage to get. Pretty much, they all deserve angel wings.

A word about his surgeon, Dr. Williams. Words aren’t enough, in all honesty. That man ranks up there as amazing along with the nurses. He explains his care to us, explains why he chooses to do what he does, and offers a lot of support in and out of the hospital.

One other group who cannot be forgotten is the wonderful group of nurses in the Radiation Oncology and Chemo administration center. Vickie, Wynne, Tracey (and Lisa, Jane, and Marie in Dr. Zinreich’s office) all provided wonderful care, nearly everyday with radiation, once a week with chemo, and on visits. And lastly, Dr. Levine and his assistants in the Medical Oncology Department were all wonderful to us, as well.

In addition to all this… Our youngest daughter has been a recent “regular” patron of the ER for a series of rabies shots. Overall, we’ve received very good care there as well.

I, myself, am a user of your anticoagulation clinic, and between Janice, Maza, Cathy Custer, Stewart the pharmacist… they too deserve props as a wonderful care team. They do a lot to make sure the visit goes smoothly and quickly, answer all questions, and if one of the pharmacists doesn’t have an immediate answer, they offer to locate it for you.

Once again, thank you for all the support we have gotten from your facility in the last year, especially.

Sincerely,

The Ballinger Family

Ken, Katie, Emily and Lillian

A life lesson...

(click on picture to enlarge)

You know, one would think that after three surgeries, two months of chemo and radiation, countless days of throwing up anything I tried to put into my system and all the other indignities that come with having cancer, that my attitude on life would have soured just a bit.

Actually, quite the opposite has happened. My outlook has brightened in a couple of ways. One way is that I am now trying to take a camera with me whenever we have a "family event". Not only do I want to take pictures to share with people, I want them for the memories that are attached to the pictures. Take Saturday for example. To 99% of the planet, it was just another Saturday and Lilli's softball evaluations were just another event in that day. To me, it was something different. It was the day after my 3rd surgery and I wanted to get out of the house. I needed a victory. I think it's safe to say that I got one. Having the pictures will give me something to look back on and savor when I'm older.

Another way my outlook has changed is summed up in the comic above (click on it to enlarge it). It's hard to believe that come this summer we will have been here in Maryland for 3 years. In a lot of ways, the time has just flown by and the days just seem to blend together. Emily's getting ready to graduate high school, Lilli is a very active 9 year old and so on and so on. Yet, it only seems like yesterday that the girls were still little and we didn't have to worries that we have now. Time does fly. It flies through both the good and the bad, whether you want it to or not. The lesson I have learned from all of this looking back is appreciation. Appreciation for the days we do have together and appreciation for the people in my life. It sounds cliche, but life is precious, each day we have with each other is a gift. We should enjoy it the best we can. We should also appreciate and enjoy the people in our lives.

The easiest way to do that is to let people know how you feel about them. Tell those you love that you love them. Not just once in a blue moon, but every chance you get. Take the time, make the time, to see them as well. It may seem silly or trite now (and easy for me to say since most of my family is nearly 600 miles away), but you never know what the future holds for you or them. It shouldn't take something bad happening to someone for you to take the time to talk to them or go see them. You may not have the time once calamity decides to knock on the door of someone you care about. Don't wait until it's too late.

Live life to the fullest. Tell the people you love that you love them. You make an imprint on the lives of everyone you touch. Sometimes, that imprint is bigger than you know.

Hopefully, the 3rd chime is the charm...

Wow, what a difference a day makes.

Yesterday, after my surgery, I was in so much pain on the left side of my head that I wanted to cry. Even with taking the pain medicine it hurt so bad, I couldn't sleep. I finally nodded off around 5:00 am and getting up around 9:00 am. I think the only reason I even went to sleep was that I was taking both Perqocet and oxycodone. I am only supposed to be taking the Perqocet every 8 hours, but that's just how bad I was hurting. I would alternate the Perqocet and oxycodone every 4 hours and I think that just finally knocked me out.

I think getting some sleep helped the most. Even though I still have pain, it is nowhere near as bad as it was yesterday. I was able to actually go with Lilli and Katie to Lilli's softball evaluations today. YAY me!

Out of all my surgeries and procedures I have had to endure the past 9 months I think this surgery was by far the worst. It's not just because of the pain, that I think this one was so bad. They also decided to intubate me while I was awake! Talk about not fun. Apparently, during the surgery last Wednesday, they had trouble intubating while I was asleep so before I went completely under they did the intubation. Talk about painful. I could even feel some of what they were doing. Definitely something I do not want to go through again. At least, the anesthesiologist this time was a good guy and did his best to try to make it as easy and as painless as he possibly could.

Speaking of doctors, Doc Williams again did an excellent job. He answered all our questions, took his time with us and didn't rush anything. He even called us Friday night to see how I was doing. He even left his home phone number with us in case I had any problems or questions over the weekend. He is just awesome!

As awesome as Doc Williams is, the nurses at GBMC are even awesomer! While I have dealt with quite a few nurses in the past nine months and all of them have been great, there are two that stand out in particular. One is Joyce in pre-op, the other is Nancy in post-op. Joyce has been my pre-op nurse for all of the surgeries/procedures I have had at GBMC. She takes her time with everything and is so personable and friendly. She has really helped me feel at ease when it comes time to head back to the O.R.

Nancy, with the exception of my surgery last Wednesday, has been one of my post-op nurses for all of my procedures and is one of the most positive and happy people I think I have ever met. She is very complimentary and always willing to help. She lets you take your time with things when you are waking up and trying to get your bearings. She is also very sincere about things when she tells them to you. The last two times when it has come time for me to leave, she has made it a point to give me a hug and a kiss on the cheek. Each time, you could feel the positivity in her and it has almost made me cry happy tears.

I have been very blessed to have these people on my front lines in my battle with cancer.

The force is strong with this one...

Just a word on "fate"

You know, many a day has gone by that I used to ask myself.. what kind of a god would encourage me to move my immediate family over 500 miles away from our entire extended family, and then yank away the good job that I moved here for? Seems like he has a crappy sense of humor, to me.

However.. Ken would have developed cancer no matter where we lived, and likely at the same time. Would we have discovered if sooner had we stayed in CIncinnati? who knows? maybe.

I have experienced enough "coincidences" in my life that I honestly do believe things happen for a reason... we are placed "where" we go for a reason. Had Ken been diagnosed with heart trouble, or had a stroke or anything like that, you can bet I'd want him in Cincinnati at Christ hospital. But that's not what we were dealt. He ended up with cancer in his tongue, broadly classified as "head and neck" cancer. In Baltimore, MD, near Towson specifically.

What is the significance of that, you might ask. Well, not that GBMC can be blamed for tooting their own horn.. but by everything independent we've seen, heard or read... in addition to being told, Ken happens to be literally smack dab in the middle of the absolute best "head and neck cancer" treatment facility available in the entire country. 50 states, thousands of square miles, and we ended up here. I'll admit... it does not SEEM like such an "easy" time right now, but think about it objectively. It has honestly been less than 1 year since Ken was diagnosed. (Granted, it has been decidedly the LONGEST hardest 9 months of either of our lives, hands down.) But to go from diagnosis, to surgery, treatment, beginning to bounce back from the side effects.. and to still have 2 more surgeries.... It is without a doubt the most aggressively I have ever heard of anyone's cancer being attacked. The treatment Ken was prescribed through Dr. Williams, along with Dr. Zenreich and Dr. Levine has literally CURE rates in the high 90th percentile. Granted, Ken's cancer seems to have a belligerent little mind of its own. But something we have noticed is that because of that fact, Ken seems to be getting what seems to be slightly preferential treatment. Meaning: When something like a test result needs to be read and analyzed... usually it is a 24 - 48 hour window before you can expect to hear anything. With the recent PET scan, his surgeon, Dr. Williams personally called Ken within 5 hours of Ken leaving the radiology facility. The frozen sections removed from Ken's last glossectomy were perhaps analyzed a little closer than most would have been... mostly because they are beginning to expect anomalies where Ken is concerned.

Dr. Williams has extended conversations with us regarding all our questions... even in the aisles of WALMART!! One thing he has impressed upon us is that he approaches Ken's treatment and "plan of attack" from the perspective of "how would he like himself treated, or his family member, if they were the one facing this". At least twice now, he has called us at home within a day or hours of Ken having surgery. Tonight, he made sure he called us from his home phone so that we would have that as well, in our arsenal in order to get in touch with him if the need arises.

I cannot say enough about the quality of caretakers we have encountered at Greater Baltimore Medical Center. They recognized him today in registration, as having "been there recently" (10 days ago). His nurses in Pre-op and recovery remember him.. (I really wish the would quit inflating his ego!!!) Other than my own minor trauma at the coffee shop today (they do not stock my single favorite addiction in GBMC on Thursdays or Fridays. Therefore.. any procedures from here on out MUST be on Monday Tuesday or Wednesday! LOL Anyone else know where they have chocolate filled croissants??)

My point it this... Yes, we are all frustrated. I'd daresay, at least for me, this is the closest many of us have come to traveling the cancer treatment road with a family member, or one so close to us. I know I'm frustrated with getting my hopes up (we got it all this time...) only to discover another surgery is needed. But completely objectively... we've been "lucky" so far. And we get such amazing care. If this is something we MUST got hrough, especially having to do so without the immediate emotional support of our extended family... I want to do it here. With this group of people.. these doctors, these friends.

Thanks, everyone. I need sleep now....

today... from Katie

Well surgery today is over. Seems to have gone well. The offending harbour of bad cells was excised, along with a portion roughly 1/4 by 1/2 inch long along the front tip of Ken's tongue. Seems that portion had actually died, due to lack of blood circulation, perhaps. Dr. W did not seem terribly concerned with it.

Ken's blood pressure was slightly elevated in recovery, probably due to the fact that for some reason, he seemed to be in more pain this time than he has the last couple times. We think his mouth had to be held open further this time.

Sometimes, watching all this makes me very angry. No one deserves this crap... and if I find out there's a way to prove he was affected by benzene in the water when he was stationed at New River... heads are going to roll. As odd as it sounds.. I need some one to hate for this. He is hurting, and no amount of medicine seems to help. We're all tired....

round three set for tomorrow morning...

*sigh*

This cancer just does not know when to go away.

The final pathology tests showed that there were some cancer cells in the inked margin from the surgery last Wednesday. Apparently, what they found is very small, about a millimeter big and is on the top portion of my tongue, near the front.

Surgery is scheduled for 11:30 am, with show time for me being 9:30 am. Doc Williams said the surgery should take about an hour and is scheduled to be done as an outpatient procedure.

Hopefully, this will finally take care of it.

testifying before State Legislature for HopeWell cancer support...

Last week Katie got a phone call from HopeWell cancer support asking us if we would like to go to Annapolis this weekend to help them secure funding from the State Legislature. Katie happily agreed. Little did we know just how wonderful this day would turn out.

Just a little background about Hopewell first from their website. For 17 years, our work at HopeWell Cancer Support has been based on the premise that people affected by cancer need more than just medical care. HopeWell’s programs are specifically designed to complement the medical system by helping people with cancer, and their loved ones, cope with the life-changing impact of a cancer diagnosis.

At HopeWell, we recognize that an emotional response to cancer is normal and that being surrounded by people who understand is part of the healing process. HopeWell offers a broad range of programs and activities, including support groups, educational seminars, exercise classes and social activities, that allow people to access a community of support that is unmatched in the Baltimore metropolitan area. All of HopeWell’s programs are offered free of charge and are open to people at any stage of their journey through cancer.

The support they offer cancer patients and their families is nothing short of phenomenal. We took the girls there for a kids support group when I was going through my treatments and the help they gave the girls really went a long way in helping them get through everything. So, of course, when they asked us to help them, we jumped at the chance. During the course of the week Katie had been talking with HopeWell about the trip and they asked if one of the girls could speak at the hearings. They only had a few minutes to state their case and they felt that the testimony would have more impact if it came from a child. Katie & I decided that, if she wanted to, Emily would be the one to testify for us. When we asked her, she jumped at the chance.

It turns out that it was the four of us, a few members of the HopeWell staff and one other family with two kids that made the trip to Annapolis. We had to testify at two committee hearings today. First was the House of Representatives Appropriations Committee, at 9am. Then we went in front of the Senate Budget & Taxation Committee at noon. When it came time for Emily to testify in front of the Appropriations Committee, as nervous as she was, she delivered a knockout performance. She spoke clearly, concisely, and projected her thoughts and voice with confidence.

After that, we had some time before the Senate hearing, so our delegate, Rep. Stein, took us on an unofficial tour of the State House. Turns out that not only does Maryland have the country's oldest working state house, it is also where George Washington resigned his commission as Commander-In-Chief of the Continental Army in 1783.

While we were taking the tour and having lunch, we came to find out that we would have more time in front of the Senate committee, so the HopeWell people asked Lilli if she would like to speak. After seeing what a good job her sister did, she jumped on the chance and spent the rest of her time writing down what she would say.

Mere words cannot adequately convey just how awesome the girls did in the Senate hearing. Lilli went first and gave a flawless delivery of her testimony and how well HopeWell had helped her. Emily went after her and barely got two words out before she started crying. She got herself together and gave the Senators a brilliant testimony, that had a few of them teary eyed. After Emily's testimony, Lilli leaned over and gave her big sister a big hug and they just kinda leaned on each other for a few seconds. It was a very emotionally moving experience. It so impressed the Chairman of the Budget and Taxation Committee, Sen. Ulysses Currie, that when we were finished testifying he specifically told the girls that they did a great job today.

While I am always proud of Emily and Lilli, what they did today made me prouder of them than I have ever been. They were given an opportunity today to stand up and help make a difference. Not only did they make a difference, but they did it in a memorable fashion.

Home sweet home...

I got home yesterday from the hospital. I am tired (ok, exhausted is more like it), my mouth and face hurt, my face and neck are swollen and what is left of my tongue is swollen so much that it takes up most of my mouth. Yet, I feel so awesome! I have beaten cancer again!

Doc Williams said that pending the final pathology results, this should be it. He is pretty confident that he got everything this time. He said that the tests they ran during the procedure showed that the margins are good and it looks like everything was gotten out. This tumor was about 1 centimeter big and had "feelers" going out from it. Because of those "feelers" Doc had to take more of my tongue than he originally thought he would have to take. That is why they had to do the bolster and skin graph. The bolster will come out next Thursday. After it comes out, Doc says that I should have more use of my tongue. In addition to taking the tumor out, he also "cleaned up" some things from the last surgery. That should result in more movement in my tongue and clearer speech. YAY!

Now, while I am glad that Doc Williams did everything he did, I was still surprised to see just how bad my tongue looked. OW! What is left of it is swollen up about 5 times its normal size and is bruised beyond anything I ever would have imagined. I have never seen a tongue look so purple. Then there is the area that was cut out. It is all so nasty looking that even Lilli was grossed out by it. (Doesn't stop her from looking at it though.)

This post would be longer, but Katie did an excellent job in the previous post of describing most everything that went on Wednesday. She is also doing a great job of taking care of me too. I am lucky.

Hopefully, on Thursday they will take the bolster out and that will be the end of this little adventure.

Citius, Altius, Fortius

the wife's perspective of yesterday....

Well, It's Katie, here. Ken's still up at the hospital, after what was not likely the most restful night. Are they ever, in a hospital?

So.. here are things as I understand them.

First off, let me say, Dr. Williams is amazing. That man puts up with my warped sense of humor, runs with it, and helps us understand this so much. He answers my questions like they're nothing. I heart him.

When he was describing the tumor and its behavior, it reminded me of something. (PIP, you'll be proud of me here!) Do you know what Rhizomes are? When a plant procreates by sending out a root system. Looks like a whole new plant that grows, say 20 feet away, but it's actually part of the same root system. Well, that seems to be the way Ken's cancer is behaving. Dr. W called them "scouts" or little satellites, but he is reasonably certain he got the "host" and eradicated any offshoots.

He had to remove a good portion of Ken's tongue this time, and used a skin graft from his thigh to create a "bolster" and the bandage holding it in place will be removed next Thursday. (And no! he will not have a hairy tongue because the skin came from his thigh. LOL) He has a patch of skin removed about 3" x 2", a few layers off his thigh. Doc W said it will feel like a rug burn.

To our knowledge, this means no chemo and no radiation this time. (YAY, and that's an understatement!)

It's a little after 8 a.m. and Ken has messaged me that he can come home.

What does he get to come home to? A 9 year old who has to start rabies shots today or tomorrow.. our life is SO exciting! (Sorry mom, if you read this before I call you in a half hour!)

More to come later... we need to talk about his teeth.

off into the abyss again...

Well, round 2 kicks off with surgery in the morning. Hopefully, this will be it. We have to be at the hospital @ 7:45am with surgery scheduled for 9:45am. Doc Williams has said that this should be a 2 to 2 & 1/2 hr surgery. Depending on how I respond to everything I should be released from the hospital sometime Thursday.

While I am nervous, I still feel somewhat calm. I am confident in my surgeon. I am also confident in what the PET scan found (or didn't find). I really feel like that this round will be short and quick.

The last two weeks have been a whirlwind of emotions for me. I have ranged from shock when they first told me the cancer was back to feeling like my old self, full of confidence that I can win. Cancer feeds on negativity, fear and despair. Cancer expects me to sit and cower in a corner, wonder "why me" and feel sorry for myself. I will not give it the satisfaction of having any of that from me or my team. Cancer expects me to be afraid. In fact, it is cancer who should be afraid.

No, belay that order. Cancer shouldn't be afraid. It should be terrified.

"We're going to fight. We're going to be hurt. In the end, we will stand."

The best news we could get...

I had the PET scan today. Also had a CT scan. The scans were done this morning. I got the results this afternoon. Dr. Williams said that the cancer has not spread and is localized in the tumor he took the biopsy samples from. The tumor itself is so small that it does not show up on the PET scan at all! All that needs to be done is to have surgery to take it out and that should be the end of it! Surgery is scheduled for next Wednesday March, 10th.

This is the best news we could get. This surgery should be less intrusive than the last one. This time all they have to do is just take the tumor out. They won't be taking any lymph nodes, so the recovery time should be quicker as well.

Looks like we caught this one in time. YAY!

No chain, no lock and this train won’t stop. We got no fear, no doubt, all in balls out!