Worst Day Ever - 1st Anniversary

Worst Day Ever…



I was in the office early because it was my 15th anniversary with Bennigan’s and we had just had a terrific St. Patrick’s Day weekend celebration the two previous days. I remember getting that phone call from my boss at about 8 am on Monday, March 19th 2007. He told me that the company was eliminating my position. For the first time in 15 years I was unemployed.


That sounds like a terrible day already doesn’t it. But Joan and I had been through our rough days before. Five years prior while selling our house we found out almost accidentally that a woman had stolen our house key and moved in illegally while Joan and I were living in an apartment waiting for our new house to be built. We were in serious trouble. But we kept our heads and maintained a united front as we made decisions that would impact the rest of our lives. We got through that, we could certainly get through this new challenge. Besides, I had known for some time that I would be in this position. I had been interviewing for months and was within reach of two excellent job offers. Not to mention that my old company was going to pay a very fair severance package. In fact I had little time to dwell on that morning’s “Wake-Up” call. I had an interview across town at 10 am.

Ironically I had started with Bennigan’s reluctantly. I had moved to upstate New York to be with Joan and was promised a job by my new Room Mate who worked at a high volume four star seafood restaurant down town. Shortly after moving I realized that I was being dragged along and went weeks with no job. Nearly everyday I drove past the Bennigan’s on Erie Blvd and sighed with a sense of inevitability. Grudgingly I filled out the application and was hired as a server. Eventually I took that little waiter job to a vehicle to travel four continents opening restaurants and training their managers from all over the world. I was running Orlando and most of the East Coast of Florida at the end. It had definitely been a good run.

It had been a good run so far for Joan and me too. We had met in 1979 and I fell madly and deeply in love with her instantly. I brag all the time that I can remember what she was wearing down to the piping on her shorts up to her retainer. She was a knockout. Through a series of unfortunate events we had been away from each other for nearly eight years when I started calling all the Donnelly’s in the phone book in Syracuse, NY where I had heard she lived. I found her, we spoke, and I fell madly and deeply in love all over again.

So my interview at 10 am was suddenly much more important that it had been when I initially set it up. It was with another restaurant company and one that I would have been proud to associate myself with. The interview included an assessment which went pretty well and the District Manager and I got along well enough for him to ask me to stick around and have something to eat with him. I was certainly looking good. As I drove home I remembered that it was also March when Joan and I moved to Orlando. I moved to New York to be with Joan, but I struggled with the ridiculous weather. A veteran of only three winters in Syracuse I was present for the coldest winter on record for Syracuse and the very next year we broke the snow fall record. Half way through the third winter I asked Joan to pick any warm city and I would convince Bennigan’s to move us there. Two months later as Syracuse broke the previous year’s snow fall record we moved to Orlando. Soon after we moved I asked her to marry me under the Space Ship Earth at EPCOT Center (because I was too afraid when we were in front of Cinderella’s Castle) and we were married in a Disney Wedding.

When I got home that day Joan was at work and there was a message on the machine. Joan had a third exploratory surgery during the previous week and we had been expecting some news from the lab. Joan was feeling as strong as ever but she noticed a lot of swelling around her lymph nodes in various parts of her body. Twice before the surgeon had removed nodes for testing and they were all filled with a fluid that was not harmful. After the surgery he had told me that the third one looked just like the others and was probably nothing to worry about, so we had not worried.

I played the message and Dr. Dubrodin’s thick Polish accent was broken by a wavering in his voice as he said nothing but to have Joan call him right away. I have heard people say that their heart fell but never knew what that meant until that day. I felt no pain but a hollowing out as though everything inside of me had been removed. I remember taking the phone in my hand and calling Joan at work to ask her to quickly call the Doctor before his office closed and hung up the phone.

As I waited for Joan to call me back I thought of her grandmothers who had both been taken by cancer; one of them from cancer in her lymph nodes. The wait was eternal.
When Joan called back she was sobbing. The news was terrible. Joan had Lymphoma and her surgeon recommended that she plan to begin chemo-therapy immediately. We were devastated.
When she came home we cried as we planned our next moves. It would be days before I even remembered that I did not have a job. Suddenly I realized how little the things around us really mattered. The massive house we live in, a 65 inch High Definition TV, our fancy cars and clothes. I did not care if I had none of those things. What I wanted was Joan. I remember so distinctly the exact moment that I realized that our worst case scenario after I lost my job was that we lose the house and cars and move in with one of our parents – both of whom we love. The worst case scenario for Joan’s illness was utterly unthinkable. Therefore Joan would survive and when we were completely sure that she would be fine I would find a job. I called the two companies that were preparing offers for me and told them that I would not be able to accept an offer.

But just as God had a plan to bring us together – twice – He had a plan for us to pursue Joan’s treatments and appointments and for me to get a new and better job. A former boss had reached out to me and eventually offered me a job making more than I had ever made and we would not have to move. My travel schedule would be cut in half and the new company, Cracker Barrel, was growing not receding. The pressure of protecting myself would be non-existent. My work situation just could not be better than where it was one year ago.


As we sit so close to the anniversary of Worst Day Ever I continue to try and draw a conclusion or make some sense of so much misfortune on one day. I think back to those two phone calls coming within hours of each other and try and draw a meaning or a specific significance from them. I can’t. Quite frankly I wonder now if we are not meant to draw a conclusion so quickly or maybe not at all. What the worst things do in life is make you realize how wonderful the good things are. Joan and I have had a story-book love and marriage. She had been my first love; we are living the American Dream. Why did it take a disaster for me to see how unbelievably amazing my life was? Norman MacClean said “When I was young, a teacher had forbidden me to say "more perfect" because she said if a thing is perfect it can't be more so. But by now I have seen enough of life to have regained my confidence in it.” No doubt. I wish my wife did not have cancer, but today my life is more perfect because I realize just how perfect it is.

Cancer Makes Me Crazy!

Joan and I have just returned from her most recent visit to the doctor with more mixed results - big surprise.





Before the holidays were over and things could get back to normal for all of us, Joan had started her new normal of a constant stream of Doctor's appointments, hospital visits and general poking and prodding. In Late December Joan had another series of scans, PET Scan and CAT Scan this time. While neither are physically painful in the slightest there is the requisite fasting and barium beverages at four AM that are loads of laughs for sure. The PET Scan comes with a radioactive beverage that is so toxic that the nurse who brings it to you wears a full suit of lead and long butel rubber gloves. And of course there are blood tests at the Hospital Lab as well as three blood vials drawn at the Oncologists office. This was what Joan had to squeeze in between visits from our family, our own travels, my company Holiday Party - which we hosted - and her full time job. Don't cry for her too much, I do most of the heavy lifting around the house...


Anyway, if that were not enough to make you pretty crazy, there is the new news for us that Joan's cancer has gotten just slightly worse these last three months. Joan has a new cancerous node in her neck and two nodes in her arm pits that are larger than they had been. This news was especially disappointing because Joan and I were hoping that we would be able to alter her schedule to have these cycles repeated every six months instead of every three months. Crap...



Joan has not quite reached this stage yet...

Since it is my job to remain the optimist I will divulge one other personal secret that was learned on this day. Joan has a Kidney Stone measuring 3 MM in size. Her reaction was anger. Truly there is no one that I know that takes better care of themselves and has never, ever had a puff of a cigarette or any type of illegal drug in her life. She exercises daily and will run outside even when it is raining. She even makes our dog eat special food that can only be purchased at our Vet's office and costs a fortune. She eats berries and drinks green tea and gallons of water everyday, and she gets a Kidney Stone. This made her nearly as crazy as the fact that the Titans only had to play 15 contested games in the NFL this year while the Browns had to play in 16 contested games yet it was the Titans that went to the playoffs, but don't get me started on that.

My reaction of course was different - Hey - not my Kidney Stone to Pass. In my way of thinking God has put this stone in place to tell us that in reality everything is going to be OK. Joan has cancerous nodes that are about 2 CM in diameter or about 50X bigger than her Kidney Stone. But her cancer is not considered threatening to the degree that we have to treat it with terrible poisons yet. Joan's biggest fear is that this cancer will turn into a more aggressive type of cancer like what happened to Tony Snow and Elizabeth Edwards. But now we know that there is no other cancers anywhere in her body that we do not know about. Sure, the cancer that is there sucks, but at least we know that it is there and it can not make a move without us seeing it. In the meantime with all of the tests she has gone through we know exactly what is and is not going on in her body and we get an update every three months. That is not bad.

So we made the appropriate appointments for three months from now so that the NEXT holiday that gets wrecked by her cancer is her birthday in April. Sweet. I have no idea how I will put a positive spin on that one...

I guess I will have to start early.

As always leave a comment here and it will go directly to Joan's email. Thanks so much for your prayers for us both. Though much of what I complain about may seem selfish and petty, we do realize everyday how gloriously wonderful our God has been to both of us everyday of our lives. These pages are just a way to download. Call it a catharsis, and know that I will keep you all posted on our next update!

Still around the corner...

For now, we are keeping the Chemo option around the corner.

I never know how to feel coming out of these appointments. Frankly, I hope that Joan will not mind that I say this (Joan is out of town as I write this!) Joan wants to hold this disease at arm's length and I want to kick it in the butt! Well, that is not exactly true.

Perhaps you have heard that Chemotherapy is a dreadful option for reducing the risk of cancer growing in your body. But you have probably also heard that it is a necessary option and even though it is rough, it is often the only option availbable to save your life. So with this conundrum Joan is faced with getting the chemo now or waiting until her symptoms become worse and doing it then. Sort of an Odessian Scylla and Charybdis kind of situation. The two options are both pretty unattractive. (though no sailors were harmed during the typing of this blog.)




Joan had been taking readings of her night sweats to see if the temprature was high enough (100.5) to cause concern. Too many of those high readings would certainly mean chemo. But for the weeks that she religiously kept those readings she was never over 99 degrees, far below the danger zone according to Joan's Oncologist Stephanie Capone - who quite literally has a skeleton in her closet, I have seen it. She dressed it in a gypsy outfit for Halloween.

Seriously the chick has a skeleton in her closet!


The good news for Joan is that the majority of her affected nodes have remained very slow growing. After a review of the latest tests and a thourough going over from Dr. Capone's Physicians Assistant, Leeya Pruitt we were relieved. Only the nodes in her groin area are a little more active. So for now she is able to skip the chemo.

For now.

I am afraid as always that this dreaded "cure" is just around the corner. But Joan

smiles as we leave because she knows that she has pushed her chemo at least three more months away. She was also pretty happy because she knew she was leaving 12 hours after the appointmentfor a week in Cleveland with her brother Jack. There is always something else just around the corner...








Check out Dr. Capone at this web site filled with info and links to cancer stuff.

Joan, You Have To Have Chemo

Thank goodness I take notes during these doctor's appointments because those words "Joan, you have to have Chemo" keep ringing in my ears.

Joan and I went to her long anticipated second opinion today and let me tell you it was brutal. We went hoping to validate what we had heard from our terrific Oncologist Dr. Stephanie Capone and to some extent we did get that validation. However, Dr. Maria Flores has a very different way of looking at things and boy did we get a different view into our futures today. In life I guess it is always how you look at things.

Of course we arrived way to early as we usually do to this appointment but we were ushered in pretty quickly when a guy who must have ridden his skateboard to work shouted "Jo Ann!" into the waiting area. We knew he meant Joan (how do you get Jo Anne out of J-O-A-N? Joan asked. Who can answer such things?). Anyway, after a lying bastard scale and blood pressure check we waited for Dr. Flores.

Dr. Flores is not a large woman. But she exploded into the room like the Tasmanian Devil.

JO ANN?

Sure, that's me...

Dr. Flores was also unimaginably loud for the tiny cinder block room we were sitting in. Her shouts of welcome made us flinch in the tiny room and the she proceeding to examine JOAN. She mashed all the favorite lymph node hang outs in her neck, arm pits and groin area and threw herself into a chair. That is when everything quit being so funny.

Dr. Flores tells us that most of what we know about Folicular Lymphoma is correct. It grows slowly (good news!) but can kill you and is incurable (dang...). But her advice was completely different that Dr. Capone. Where Dr. Capone wants to wait because chemo is pretty destructive to your body, Dr Flores wants Joan to start chemo soon. Her reasoning is that everybody who gets this type of Lymphoma must have chemo and to wait until she is fifty will only add the further inconveniences of arthritis and other maladies of aging.

Worse still, Dr. Flores continued to ask probing questions about Joan's symptoms. She determined that Joan has not only stage three cancer, but a worse kind of stage three (3B) because of her night sweats. She has had the night sweats for a couple of years and those dramatic up swings in body temperature are a really bad sign for cancer patients. To Maria Flores, once that happens, you get chemo, no question about it.

Some new things about her Lymphoma that we learned were that the indolent period of her Lymphoma is usually about 5 - 10 years. We think Joan had this thing for a couple of years before we finally had it diagnosed. So she has a couple of years left easy before the average person would begin to feel the effects of the disease. The other news is that once she has the chemo if it is effective (over 90% of the patients have the cancer completely removed when the therapy is complete) she can look forward to a 5 - 10 year period of remission. Unfortunately this type of cancer is also the type that will frequently turn into a more aggressive cancer like Liver or Lung cancer. So with all of this information Joan knows that she will have to get chemo therapy and although some of the timing may be in her hands, ultimately she will be strapped to a chair for hours per day and have poisons pumped into her body.

So we left the office and had a beer.

We have scheduled another appointment with Dr Capone to further discuss these new revelations and get a game plan for our next course of action. Until then we are still in a period of constant reevaluation of our out look on this disease and it's impact on Joan. And our view on the issue is constantly changing. I guess it really is all about how you look at things.

Looks half full to us.

My Princess Bride

Get used to disappointment.

I love that line from the Princess Bride. Dang, I love just about every line in the movie. But I hear myself remember that line frequently. In the movie as Westley and Inigo Montoya (you keel my father) are fighting Montoya asks Westley his name. When Westley refuses to answer he tells Montoya "Get used to disappointment." When I am let down I remember those words and certainly at Joan's last visit I remembered to try and get used to disappointment.

Joan had her most recent set of scans last week and her follow-up with Dr. Capone gave us some good news and some bad news. As mentioned before Joan has lymphatic nodes that have cancerous growths in them. (Scroll down for wicked awesome graphics.) There were some nodes that have remained at the same level of cancerous growth as before. That means that they are metabolizing enough to remain constant in size and not growing. That is better than growing, but not as good as her nodes that have started reducing themselves in size. In her chest or armpit area (somewhere in between) where Joan's cancer has not only stopped growing but has reduced in size. The "net-net" was that her cancer has not grown in the past three months. As those of you that know Joan have seen, this level of cancer has done nothing to change here activity level. She still works out five days a week like nobody else in the gym and she still enjoys spending one of her days off with her mother and the other day in the yard. If the cancer stayed at this level forever we would have no problems. But that is not usually how cancer works.

Thank you so much for bringing up such a painful subject. While you're at it, why don't you give me a nice paper cut, and pour lemon juice on it? - Love that movie.


Anyway, we are exactly where we were three months ago. The good news is that her lymphoma is not worse. But when is that ever really good news. We finished with the Dr.'s appointment and went to PF Chang's for dinner to discuss getting a second opinion from another oncologist. It sounds like Joan would like to do that and I guess it makes sense. Joan has pointed out that when a professional athlete receives a diagnosis they generally keep seeing doctors until one tells them what they want to hear. In her case she has a doctor who still is not recommending the dreaded chemotherapy. Maybe since she has the plan that she really want we should just take it right? But in the last four months she has had two CT scans, two PET scans, three surgeries, and bone and marrow aspirations. All of these tests have been read by the same oncologist. Joan's friend Christy who recently crushed her Breast Cancer has recommended her doctor and Joan is pretty keen on letting someone else confirm our doctor's recommendation to continue to do nothing until something changes. Pretty much this is her game and I am just a sideline reporter. So what could I say?

As you wish.

Suddenly Everybody is Jumping on the Cancer Bandwagon

With the recent announcement that Fred Thompson has cancer it marks four presidential candidates that are currently being effected by the disease. Rudy Guiliani and John McCain have both seemingly won their battles and Elizabeth Edwards is fighting a variety of cancers as is current Presidential Press Secretary Tony Snow. Now enter former senator Fred Thompson from Tennessee. The Republican has been considering a run for the White House and in preparation of that announcement he has released details of his personal fight with a lymphoma very much like Joan's version. It is being reported that the Republican was releasing this information to gauge public reaction before deciding to enter the race.

While Sen Thompson has a type called Marginal Zone Lymphoma the disease acts very much like Joan's Follicular Lymphoma. And the reason for this entry is that the similarities in those illnesses cause very similar treatment options. Sen Thompson has some nodes removed, as did Joan. Those nodes revealed a very slow growing low grade cancer, as did Joan's. The Senator waited a couple of months to see what would happen next, as Joan is doing now and when the cancer was still present he began a regimen of a drug called Rituxin. The drug has already been mentioned by Joan's doctor as a possible treatment option in the near future. The Senator was blessed with a complete remission without ever having to receive a chemotherapy session or any further treatments.

“I have had no illness from it, or even any symptoms,” Mr. Thompson said in a statement. “My life expectancy should not be affected.”

"Right now, he has no evidence of disease," said Dr. Bruce D. Cheson, head of hematology in the division of hematology/oncology at Georgetown University Hospital in Washington. Many such patients "can live a normal life span," he said.

About Thompson's consideration of a possible presidential bid, Cheson said: "I would strongly encourage him, if this is what he wants to do, to go ahead with it. His disease and eventual treatment for this disease should not impact on his ability to perform this job."

Some 22 percent of people with the disease have the type of lymphoma that typically follows a benign course, Lichtenfeld said.

Thompson appears to have that type, suggesting that "his outlook is, in fact, excellent," he said.

Thank you Fred Thompson for being forthcoming and to all the candidates touched by this disease we say thanks. There are so many examples of people who survive this disease with absolutely no long term effects on their lives. You all serve as an inspiration to those just beginning their journey.

The Results are In...

And I wish I had better or more encouraging news, but the results of the test provided us with a cloudy future with a mix of good news and bad news.

♫♪Tell me something Good (tell me, tell me, tell me)♫

Joan was singing Chaka Khan all morning and again said that one line as we waited for Dr. Stephanie Capone to come in and read the results of Joan’s recent Bone Aspiration (*ouch*) and PET scan. I wondered if this being the first time that we ever waited more than five minutes was a bad sign. Who knows but Joan, who pretty much only knows that one line from the Rufus and Chaka Khan song, exhausted even her undying enthusiasm pretty quickly. (Didn’t Stevie Wonder write those lyrics?)

When the Doctor came in Joan called out again

♫Tell me something Good♪

To which Dr. Capone answered

♪Tell me that you love me ♫♪

She understood the song reference immediately. We have the perfect doctor for Joan don’t we?

Well she told us that the Bone Marrow Aspiration had provided us with good news. There was “flow symmetry” and that there was no evidence of new lymphoma in the marrow. Cool, if there had been Joan might have had to go through that again and drilling into one’s pelvis is apparently painful...

The bad news was that Joan’s cancer is more spread out than we ever thought probable. The PET scan showed that Joan had lymphoma in three parts of her lymphatic system; she had lymphatic cells in her Mediasteinem (4), Hilum (2) and her Inguinal lymph nodes (5). Having cancerous growths in that many separate places and places that are far apart brings you up to stage 3 cancer rather than the relatively safer sounding stage 1. This was a big disappointment for Joan and me.

Exactly what Joan looks like in a bikini...

Joan has had two lymph nodes removed from her neck (1) in the diagram. Both were found to be enlarged, but no cancer was present. She had two of her Auxiliary nodes removed (3) and that is where we knew she had cancer before. It turns out that we had the only two nodes with cancer in that area targeted and removed. That area is apparently healthy (great news!) It is the other areas which are now believed to have cancerous growth in those nodes.

♪Tell me something Good (tell me, tell me, tell me) ♫

So Joan is stage three now because there are cancerous cells above and below the diaphragm and they are in three different parts of her body. But she is still low risk and as mentioned before she as an “indolent” or slow moving type of Lymphoma. Follicular Lymphoma is with you forever when you have it. There is no cure, only treatments. But many who have this type of cancer never need treatments because it does not grow. We are hoping in three months when Joan has her next scan there will be little or no progress in those affected nodes.

For now Joan has been presented with two options: Do nothing until the scans three moths from now and see how they look or begin Chemotherapy right away. We chose to wait. If there is a bright spot in the Chemo discussions today Joan will, if ever forced to undergo this destructive treatment, only have a relatively mild technique compared to many that must suffer through this cancer management method. Even better news is that it is entirely possible that the cancer will remiss on its own. As unlikely as that sounds it happens a full 20% of the time in Follicular patients, and we believe that it has already happened to Joan in the past. If Joan does have to have Chemo it will probably start in the summer and it will probably cause her hair to thin.

♫Tell me that you like it, yeah♪

Joan says that her hair could use some thinning. Yeah, I do most of the vacuuming around here. I am not so sure of that but that is just Joan being Joan…

So for now we wait. I hope that you will all continue to pray for Joan and her doctors. Joan has loved all the comments and the over 200 visits that her site has received in a little over two weeks. The many cards and the lovely flowers and candy and fruit have been great for both of us. I promise to have this site updated every couple of weeks to keep you in the loop. If Joan has to get scans every three months for ten years, which is a possibility, but we never have to pump her veins full of poisons both of us will be pretty happy people.