Joan's Journey

Joan's Latest Here

2010-01-15T05:49:00.001-08:00

Thanks

The World Renown Johns Hopkins Hospital

2009-07-31T20:07:00.000-07:00

Hello family, friends and passing gawkers! We are writing you after our first visit to the World Famous Johns Hopkins Medical Campus. Wow, soak that in for a minute.

As you must know by now we moved to the North East several months ago and had to give up a LOT for me to take a fantastic promotion. The bad part: Joan leaves her friends, the job she loves and an Oncologist with whom she had developed a deeply trusting relationship. But when telling Dr. Capone that we would be leaving Florida for Pennsylvania she hoped out loud that we would be able to get Joan into Johns Hopkins Cancer Center. It is like a Xanadu for cancer doctors or something. After an initial consultation (read the details in the post below) with literally one of the world's most respected experts in treatment and instruction into Joan's specific type of Lymphoma, we were really excited about the trip to JOHNS HOPKINS finally!

I should back up a bit and tell you what we have been doing since we moved into our new house back in March. It has been a terrific move so far! Joan and I have settled in famously into our new environment. Joan found the "Heritage Trails" near by. The trail runs from York to Baltimore, about 60 miles. It is a crushed quartz and granite path that runs immediately next to a train track that was laid in the mid 1800s . Trains can not really deal with much of a grade so the path is nice and flat and is blanketed with soaring old growth trees which provide ample shade and a pleasant distraction. While I struggle pumping my get-away-sticks Joan glides through the pretty old towns we pass through and has even taken to attaching a small trailer on the back of her bike. It is a hilarious contraption we torture our dog with by locking her inside. She is incredibly confused about where we are going and why it takes so long, but Joan and I certainly enjoy riding near the rails that carried Lincoln to his final resting place in Illinois after his untimely death.

We have also enjoyed our side trips to Gettysburg to visit the amazing Battlefield Park and have even taken our bikes there too. On our last trip to the quaint little town with the gruesome past I even met Ken Burns the famous documentarian. I also cried like a six year old girl on the first day of school after peddling up the hills where real men had died in the tens of thousands nearly 150 years earlier.

Just the week before Joan's appointments we went with most of Joan's family to Rocky Mountain National Park and climbed mountains and went on beautiful hikes looking for animals. We literally saw hundreds of Elk, Deer, Moose, Marmets, Prarie Dogs, Ground Hogs and so many, many of God's creatures. It was a great week made possible because only one of us has to work right now!

Living here has been fantastic.

Our first visit to Johns Hopkins was less overwhelming... We arrived the Alan and Joan requisite 45 minutes early and went right to our first stop. But when we got there the sole employee told us that we had to check in on a different floor first and obtain an ID card of a sort. No big deal as no one else was in the waiting room... Yet...

Long story short our thirty minute process to get the required card and get back upstairs put us behind about an hour somehow. We came back

into the same waiting room which had been empty one half hour earlier was now completely packed. We were at the back of the line. We waited for Joan's name to be called and finally she was brought to the back for her CT scan and PET scan.

Joan enjoying a refreshing and also radiologically visible contrast beverage

One fantastic thing about being at the world's most prominent cancer treatment center is that we were going to have her scans done and very shortly afterward have those scans analyzed by Joan's doctor within a couple of hours! This is a huge step forward after waiting for the results for a week in Orlando.

But after getting the scans done she then had blood work done (also to be immediately read by her oncologist) and waited for the doctor to call. That process was hilarious. In a room the size of a small grocery store or PA Driver License office we waited while random doors would fly open and produce a woman carrying a clipboard. This woman would shout a name and look around the room while often at the same time another woman would be doing the same near another door. It seemed incredibly poorly designed and worse still, there were many, many people in this room ahead of us... ugh...

Finally our turn came and after calling our name we were ushered into a tiny waiting room filled with all things Baltimore Ravens Purple (REALLY?). I also noticed that whomever had designed this world famous (though rapidly receding in reputation with ME) suffered from Chronomentrophobia. Seriously, they know that people are waiting FAR beyond their appointed times and it would be easier to find a clock on the wall at a casino than inside a waiting room at Johns Hopkins.

When we finally saw Dr. Swinnen, he spoke first to me and seemed to think that I was the patient rather than Joan. He acted confused for a minute and excused himself as he had left his chart in the next room. Upon returning he spoke only to Joan after clearly being reminded by the chart that JOAN was the one he had an appointment with. The appointment itself was less than exciting but resulted in the great news that Joan still does not need to have chemotherarpy. The scans that she had done just a couple of hours before were analyzed by a radiologist who specializes in cancer. In the report her lymph node sizes had remained pretty stable, but clearly Dr Swinnen did not remember any of her information from before. He acted like everything he told us was the first time we had ever heard it. He was disappointing. The news we got was not. He next appointment is six months away, literally next year. So Joan is still kicking Cancer's @$$!

In the meantime know that Joan and I are still doing great. She is not working for the first time since I met her in 1979! She worked as a Sophmore in High School and has had at least one job since then. But she will take virtually all of 2009 off to get aclimated into our new surroundings, enjoy seeing family and waiting for me to get home so we can hike a bike or hike trail somewhere.

Man, I can't WAIT till she gets a freaking job...

So Many New Things!

2009-05-14T08:49:00.001-07:00

MAN! How am I going to deliver this update?

So, last time I updated the site I told you that I got promoted and that we would have to move. Well, since January I moved into an apartment in Pennsylvania, we sold our house in Orlando in just SIX DAYS, Joan (and Trixie and two birds) moved in with a friend's (Love ya Sara!) mom.

Joan's Last Day at T2

The Tables TURN!

THEN on weekdays I

would work and look at houses at night and every other week I would fly down to hang out with Joan in Florida. Ultimately we found and purchased a lovely home in PA (near the city of York) and we are settling in to our new lives among the farmers of Windsor Township. It is bucolic and in every way different than Florida.

But Joan has Cancer and all so we had to adjust also to a new Insurance Company and eventually find a new Doctor and schedule an appointment.

When we first told Joan's original Doctor, Stephanie Capone that we were moving to PA her face fairly lit up and she said almost immediately that her grand

est hope for Joan would be that she could get to go to John's Hopkins Oncology Center in Baltimore.

BALTIMORE?!

I have to assume that everyone reading this blog is familiar with Joan's nearly unhealthy passion for her Cleveland Browns Many of you are already aware of the fact that the city of Baltimore colluded with the Brown’s former owner, the currently dead Art Modell to steal the Browns from Cleveland. Modell wanted the people of Cleveland to buy him a new stadium at their expense even though they were already filling the 86,000 seat stadium every Sunday despite a poor team record in the final years. Watch Mike Ditka wrap up how the fans of the Browns were hosed in 1995.

Or watch it here http://www.youtube.com/watch?v=JFuN3-DbM9w

Of course most of you also know only a few short years after the Browns moved, and became the Baltimore Ravens they won a Super Bowl. All of this happened because the city of Baltimore and the finally dead Art Modell did not care how badly the Cleveland fans got screwed. They only cared about them selves.

Now we are hoping that the good doctors of Baltimore will accept Joan as a patient… Super…

When we moved to PA we knew that there would be many things that we would have to get used to. Joan now has two acres to mow instead of two passes with the mower. She had to relearn everything she knew about plants and planting them. It took us two months to get driver’s licenses and plates for Pennsylvania because of the AMAZINGLY complicated matrix of steps to get them. We also knew that we were close to the evil empires of the Recently fantastic Ravens and the Eternally fantastic Pittsburg Steelers.

Did I mention that my promotion was a really good one?

As you can see there were many adjustments for Joan to make. But clearly the mindset change required in creating a new relationship with a cancer doctor would be tough.

We were blessed to have Joan’s application to John’s Hopkins come back favorably, and we knew it. But there are so many new questions about a new doctor selected to advise treatment options on a disease with no cure. We had seen two other doctors

and they had WILDLY differing opinions. Where would the new guy fall?

Hopefully Joan and her doctor from Baltimore would have a better relationship than the Browns and the Ravens. Or the Browns fans and the Ravens fans for that matter. The Browns have been terrible against their most bitter rival, but the Ravens fans act like they hate Browns fans! After losing tons of games and quite literally our team to them, still Ravens fans are cruddy to Browns fans. Surely Joan’s doctor would not participate in this silly back and forth… We hoped.

The good news was that we got in and also that we were “assigned” to a doctor who is one of the most published specialists for the specific type of Joan’s Lymphoma! What a stroke of Luck! His name is Lode Swinnen, he is from Sweden and he is not only a Doctor of Oncology, but a Professor of Oncology at John’s Hopkins University and JH Continuing Medical Education, meaning he teaches people becoming Doctors and he teaches people who are already doctors! A Teacher and a Doctor and a Doctor Teacher! Sounded like we had scored!

So our first visit was good. It is difficult to report much more than that after only one visit. The doctor literally spent one hour and fifteen minutes just talking to us and looking at Joan’s file and mashing her various danger zones. He made us feel very good about her short term prognosis, but clouded the longer term for us. He was dead on with treatment recommendations with Joan’s first (and best) doctor Dr. Capone. He hates Chemo and does not recommend it until NOT doing it is dangerous. We like that.

So we made an appointment for new scans and an immediate follow up the same day as the scans (awesome new hospital!) for late July. Until then we wait and try and forget that Joan’s body has the potential to turn against her at any moment. Until then she busies herself with tons of yard work and other things around the house, taking side trips with me to places like Gettysburg near by (see below) and counting down the days until Football Season starts.

Joan Makes Cancer Her Bitch Again...

2009-01-22T18:43:00.000-08:00

If you missed the title I will spare you the suspense now - Joan had another good appointment at the Oncologist today!

For those of you that do not remember or have not been to this site before, Joan had not been to her cancer doctor for five months, the longest she had ever been between appointments. Since then many things have changed in our lives and both of us were silently afraid that the added stress would show up in her CT scans. Not so, not this time.

Since Joan's last appointment I was chosen for a promotion to Regional Vice President for Cracker Barrel, an absolutely amazing opportunity. Unfortunately that meant that Joan would have to quit the job she loves at Universal Studios and has loved for over 13 years. It also meant that Joan would have to sell the home that she loves and that she spent so much time creating her three time award winning landscaping. And maybe most frightening of all, she would have to find a new Oncologist. One that she loved as much as Dr. Stephanie Capone.

For those of you that do not know Joan well, you may not know that we were High School Sweethearts which, quite frankly, worked largely to my favor because Joan hates change. I just got lucky and met her in the parking lot of the old Band Room at Nordonia High School in the summer of 1979. We actually went back there together this year just after her brother Jack found her old Pom Line Captian's coat (which she will proudly tell you fits just like it did back then.) Sure, but the vinyl on it is so old that it's cracked like a Pennsylvania highway... But on to better topics.

Added stress is of course bad for cancer patients. Of the top five most stressful things that can happen to an Adult American I was forcing Joan into TWO OF THEM - moving and buying a new home. And I was heaping on tons of stress so that I could be rewarded with a big promotion.

We were able to mull over the impact of the job and all of the other changes doing some really fun things like our annual pilgramage to Cleveland for the Apple Butter Festival in Butler, Ohio. Where we were joined by Joan's sister Kathy and Sister Laura and her husband Bill as well as our Hosts Jack and Chris Donnelly. We started the weekend by Joan and Laura and I running in a half marathon where Joan beat me by over one half a mile and Laura had to hold my hand and tell me when to breathe for seven miles. But I finished long before they cleared the track. They got a picture of me running but the ladies were too fast for the photogs I guess.

As we listened to Dr. Capone read the numbers we quickly realized that the news was good. There had been no growth of Joan's cancer in those five months with the exception of one single node which had grown moderately four MM which is less than this letter I appears on most of your screens. Fantastic news. Joan texted the news to her friends at work to which her friend Richie responded - You are making Cancer your Bitch! Funny stuff Rich... Apparently the Stress had not taken much of a toll on Joan's cancer.

Good thing too because there is still a lot to do... We took a break from our many volunteer duties, like raising cash for our church's Free Clinic by dressing up like guests on Fantasy Island and talking people into writing big checks - all in character. Me - a Rocker. Joan - a Brown's fan going to the Super Bowl to see the Browns win it all. (RIP Ricardo Montalban - even you could not face her to tell her that fantasy was totally out of even Mr. Rourke's abilities.)

Anyway, we had to take a break from the fun stuff to go look for a house. Which we did and we are very close to making an offer on a home (after seeing 24 in two days). We also may have set some kind of record for selling homes. We put our home on the market on January 5th in one of the nation's worst performing markets in the country - Orlando, Florida. There were 784 homes on the market the day we put ours in the mix. only 10% of the homes were not Bank Owned, Short Sales or Forclosures. We were told it would take 120 days to sell. It sold in six. In the last seven years Joan and I have sold two homes and they were on the market for a total of nine days before offers were agreed upon.

While looking for places to live we have also peaked into where Joan would go for her follow up appointments. Our Dr. fairly glowed in her assesments of the Oncologists in the Baltimore area just one hour from where we are looking to move. So we are optomisic about that too. It seems that although we have had to deal with many, many obstacles, God has always provided an answer.

So as we get ready to face all the new stuff involved in new homes, new cities and new friends we are encouraged to know that you all continue to pray for us. We speak of you often and as always Joan loves to read the comments that you leave on this web site (they do go right to her email!). And as much as we have been blessed with this last six months or so, as many miracles as we have been witness to, who can even guess what will happen next -

Is a Browns Super Bowl really too much to ask for? We don't think so...

An Early Christmas Present...

2008-08-17T11:10:00.001-07:00

Hello again everyone. It’s time to update Joan’s latest news on her fight with Lymphoma. But before we talk about ourselves (which we realize we are fond of doing…) we want to recognize that many people who send me emails and make phone calls to us are having a tough time these days. Many of our dearest friends found themselves suddenly and unexpectedly without a job. I know that I can “speak” for Joan and say that her battle with cancer is quite a trail. She deals with illness and worry and more than anything – the unknown, much like someone without a job. But Joan has the advantage of knowing that her illness is very slow growing and with as many doctors’ appointments as she has, this thing can not sneak up on her like a company closing it doors without notice or a realtor praying that someone out there wants to buy a house some time in the next couple of years.

We all have our worries. And Joan and I know that so many of you reading this have said a prayer for Joan and you should know that we are returning the favor.

Since we last wrote to you all or updated the web site we have had another wonderful vacation (I know I am going to hear it from my friends with kids now). First in April for Joan's Birthday we went to Discovery Cove and swam with the Dolphins. Then we went to Key West as we almost always do in July to hang out with our friends Bill and Amy Edwards whom we met down there a couple of years ago. We had a blast shopping and exploring the Pirate Museum and watching America’s most beautiful sun set all as a foursome.

Joan and I also went on an eco tour of the barrier keys west even of Key West. They are uninhabited and a paradise for birds and fish. We paddled our kayak between the roots of the Mangroves and watched a mother Kingfisher teach a young male how to use a “bait leaf” to attract a fish and catch it. We watched as a six foot Blacknose shark swam under our shallow plastic boat. We later got into the water (much later I confess) and swam through the sponge gardens scaring the Lobster and watching the Cubans harvest them both. It was a great trip and I took about 100 picuters, mostly of Joan. We did have our guide snap one of us together.

No, that is not Vishnu paddling the boat, just a sign of a lousy photographer…

It was a great trip.

So anyway, when we last left Joan we were celebrating the “Worst Day Ever” anniversary by going to Las Vegas and thrilled that Joan’s Folicular Lymphoma growth had slowed to the degree that we were blessed with an extra month between scans and office visits! This must not sound like much of a victory to most, but an extra month without drinking a gallon of “Contrast Fluid” at five in the morning before driving to a hospital to drink even more of the stuff while wearing a paper dress… Well, you get the picture. Well this month’s visit was another good one.

A reminder that Joan has active Lymphoma in four parts of her body; she has cancer cells in her Mediasteinem (4), Hilum (2) and her Inguinal lymph nodes (5). 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 her largest areas of cancer. The largest node was measured one and one half year ago as 1.8 x 1.4 cm. After 18 months and countless visits, CT Scans, PET Scans, and CAT Scans that largest node is not any larger and may be shrinking! The doctors will not say that it is actually smaller even though the current measurements say that it is, we are just talking about something too small and too buried in muscle to be sure.

But we do know that she is not getting worse and so once again, our Oncologist Dr. Capone has graciously allowed us to go even further into the future before our next visit and we have until January! Merry Christmas Indeed!

So no more updates this year. But do know that we draw great strength from all of your prayers and concerns. Like I said earlier, times are tough out there, but we find ourselves awed with the richness of so many loving relationships, a God who continues to bless us and a new Offensive Line for the Cleveland Browns! Life is truly wonderful!

The Latest is Good News

2008-04-12T07:42:00.000-07:00

The news from our latest scans is great but first – a little WDE 1st anniversary update.

As most will remember it was on the same day that Joan was told she had lymphoma that I was let go from a job that I had for 15 years – to the day. So we called that day “Worst Day Ever” and vowed that we would always celebrate that terrible day’s centenary in some special way. This year for the “Paper” anniversary we tried to win some in Las Vegas. Although the winnings were minimal we came back rich in amazing vacation memories.

The most amazing happenings had nothing to do with gambling at all. First we went to see Spam-a-lot, the musical written by the Monty Python gang and it was absolutely riotous. Also fun was spending a Saint Patrick’s Day together for the first time in fifteen years. Joan was so excited about it that she made her own dress for the occasion and no less than ten slightly (to mostly) inebriated young girls begged Joan to make one for them too. And finally we spent a day in the dessert with a scientist as a guide. Red Rock Canyon in Nevada is beautiful. Like most of the sand stone in the west it all started as massive dunes in a Sahara-like desert which was eventually buried by time and pressurized into sand stone. The unique feature of this desert is the high amount of iron caused a red color to emerge in the stone. It is a miraculous place.

Anyway, Joan had her latest scans read a couple of weeks later and the results look pretty good. The same area of inflamed nodes in her left arm pit seems determined to make things interesting for us, but the rest of her cancer has stopped growing. Even that little guy under her arm has slowed in its growth to the extent that our doctors are allowing Joan an extra month between scans – and that was truly the best news of all. So although there is still growth, it is growing at a slower rate. For the last 14 months Joan has gone no less regularly than 90 days between scans, and now she gets to wait 120 days.

Much of follicular lymphoma’s progress is random. Its very nature is to “Wax and Wane” throughout a person’s life. But in an effort to be proactive in her healing, Joan is taking shots of Wheat Grass Juice several times per day. For those of you who might not have had the pleasure of drinking this vile cocktail it tastes like the last three letters in the word Wheat Grass. She has started every day for the last three months drinking a 2 oz shot of freshly (and loudly) squeezed juice at five AM and following it with nothing for 30 minutes so as to give her body its maximum effects. Then at other times during the day she hits the grass again and again looking for 8 – 12 ounces per day. I have read many times that dogs eat grass when they need to vomit because of an upset stomach. I have to tell you after sampling this swill that dogs are smarter than you think.

As I tell friends and family that this is a big deal they generally seem to get stuck on the fact that the cancer is still growing. But having so recently seen so glorious a testament to God’s creativity and power – and so wonderful a demonstration of patience – we are renewed in our belief that we will continue to keep the harmful effects of her cancer at arms length.

Worst Day Ever - Joan's Take

2008-03-14T13:27:00.000-07:00

Russians Sergei Grinkov, 28, and Katerina Gordeeva, 24, were an unbeatable Olympic pairs skating team in the 80’s and 90’s. They eventually fell in love, married, and had a baby girl, Daria. Daria was only 3 years old when Sergei, in the middle of a routine skating practice, suffered a severe heart attack and died instantly. In an interview shortly after this horrible tragedy, Katerina said she should have known that something bad was going to happen. She said life had been too perfect and happy for it to have ever lasted.

I don’t pretend that my story is in any way comparable to what Katerina endured, but the image of that tearful interview over a decade ago came racing back to me at the end of the day on March 19th, The Worst Day Ever.

Like Katerina, my life is really perfect. I’m married to a man whom I love more intensely with every passing day. We own pets that induce nothing but joyous contentment. Although my job won’t win me any Tony Awards, it’s perfectly suited for my “repetition-is-comfort” and “set-schedule” personality, allowing me to work with talented, funny people I truly enjoy. Long before March 19th, Alan and I would frequently gaze at each other over a couple of beers being enjoyed on our pool deck and agree, “We’re so blessed.”

The day started a bit off my regular schedule. I was training two new girls in my role that evening, so I didn’t have to be at work until after noon. I still woke up early and got my run out of the way so I could enjoy a few hours reading my book and relaxing before I had to leave.

Alan’s boss called while I was on the couch with Trixie and my book. They spoke only a few minutes before his boss got called away and told Alan he’d call right back. Alan hung up and joked, “Well, I guess I’m not getting fired today!” However, when the phone rang again, Alan took the phone in his office and closed the door. I wasn’t paying attention until I distinctly heard Alan saying something about “turning in his laptop.” My blood went cold. No way. There’s no way. I got up and poked my head in, and when Alan saw me he tipped the receiver away from his mouth and casually said, “I’m being let go – it’s OK though. Really. Don’t worry – it’s OK.” It must be exhausting to have to be that brave all the time. I knew he was being cheery for my sake, I knew this had to hurt deeply. My reaction was anger. What IDIOTS! Alan is brilliant. Inconceivable.

I drove to work in silence. The radio seemed too invasive, too loud. I spent the fifty-minute drive trying to prepare myself for change. I wasn’t worried about Alan getting another job, I knew he was a stud and would be snatched-up immediately. But we both knew that at his level, area manager, it would probably require relocating. I prayed out-loud as I drove, reminding God how much I feared change and how much Alan and I loved our life in Florida. I asked for His guidance and help in dealing with where He was leading us.

I told a few people at work about our situation, but soon I was doing shows and focusing on training, pushing it all to the back of my mind. After several shows, I checked my phone and listened to two frantic messages from Alan. Call Dr. Dobradin. The surgeon? I was going to see him in a few days – why call? But I called. He’s with a patient, can he call me right back? Why couldn’t the nurse just tell me what’s going on? It didn’t sound very encouraging. But, I had the next show to do, I’d have to call back after that.

I tried to focus during the show, but I felt like a zombie. When I got offstage, I sprinted back upstairs to the Kimberley “booth” to call the doc again. He was on the other line. Crap! Would I like to hold? Yes. Sigh. The booth that Kimberley (my stage character) sits in backstage is literally the size of a small closet. There’s one bare bulb that weakly illuminates the black walls and one chair. At best, it would be described as “bleak.” I’ve never really minded it before, but as I sat there, on hold, staring ant those depressing black walls, they appeared to be closing in on me.

Just then my friend, our head tech Richie walked by. Boy, was I glad to see him. His happy expression dropped when he looked at me. I blurted out something incoherent like, “Surgeon…called...I’m on hold.” Somehow he understood and quickly stepped into that tiny booth and grabbed my hand. Dr. Dobradin’s words, spoken in his thick Polish accent, were, “Well, the third time’s a charm. We finally figured out what’s wrong with you. The lab work came back positive for lymphoma.” Did I mention Doc Dobradin has the worst bedside manner of anyone in the entire medical profession? He said more, something about how I’d be seeing him again to get something called a “port” surgically inserted for my chemotherapy (!!!), but I had stopped listening by then.

Richie hugged me then went searching for Kleenex as I dialed Alan. I think his response to my news was, “You’re kidding.” It seemed too unbelievable. Then he told me to come home. But I had training! It never occurred to me that my boss would probably excuse me. Once again, in the T2 office, I explained the situation in fragmented sentences and told them I had to go. They couldn’t have been nicer. Ironically, my fellow cast members later told me that when they saw me abruptly and tearfully leaving, they thought it was because I was still upset about Alan’s bad news.

Alan met me at the door when I arrived home. He was so strong and calm. As we held onto each other, he gently said, “When this is all over, we’re going to write a book together about today. We’re going to call it, “Worst Day Ever.”

Katerina Gordeeva went on to perform solo in the “Stars on Ice” tours and eventually married and had a baby girl with another fellow skater. She landed several endorsement deals, launched her own fragrance line, and published two books, one of them in memory of her late husband. She says her greatest joy is the time she spends in her kitchen cooking with her two daughters. I don’t know her personally, but I bet if you were to ask her, she’d tell you that her life is pretty perfect, despite all that happened.

The single thought on my mind as I drove home to Alan that day was that my blessings had officially run out. I had somehow drained my lifetime’s allotment of happiness in a mere 43 years – now it would be all about hardship and disease. But in truth, Worst Day Ever has only served as a giant magnifier for the abundance of blessings still being bestowed. In the days that followed, Alan got an offer for an awesome job right here in Orlando in which he continues to thrive. After more tests and scans, we learned my lymphoma is low-grade, I’m not going to die and I am probably not even going to lose my hair when and if chemo is required. Sure, I still have some “poor me” days, but they always seem to get upstaged by the unavoidable positives; my creative and hilarious husband who diligently keeps up this amazing blog, my friends and family who’s collective prayer power could crumble walls, and a loving Almighty Father who is in complete control. Now if I could just win big on the penny slots…

So sorry Worst Day Ever, you have no power here…..

Worst Day Ever - 1st Anniversary

2008-03-09T17:36:00.000-07:00

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!

2008-01-11T13:11:00.000-08:00

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...

2007-10-05T18:54:00.000-07:00

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

2007-08-24T12:02:00.000-07:00

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

2007-06-29T18:32:00.000-07:00

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

2007-04-13T07:05:00.000-07:00

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...

2007-04-05T11:08:00.000-07:00

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.

The PET Scan is Complete

2007-03-29T07:28:00.000-07:00

Joan had her PET scan and is finally done with the testing phase... At least for now.

The last test was certainly the easiest except for the start time (we were there at 6:30 am) and the paperwork. Thankfully Joan called the treatment center yesterday and did the preliminary screening information and paid our fee. But there were still tons of questions to be answered before she could begin the procedure. As she looked over the hundred or so blocks that needed to be filled in about her medical history she said

"Remember when you used to be able to check "No" on all of these without even looking?"
Yes, faintly Joan I do seem to remember that. Are there more blocks now or are our medical histories gaining some texture... Something for everyone to ponder.

We were admitted into a receiving room which was approximately 16 degrees below zero. Every room in the country where you could potentially be asked to disrobe is kept at a temperature that would probably bother Happy Feet. I can only assume that the medical community is looking out for us all and maintaining a room temperature where no organisms can survive longer than a few minutes. The nurse of course recognized that it was very cold (he was wearing a coat for crying out loud) so he immediately brought Joan two warm blankets and put her in the most comfortable lounger that I have ever seen. Unfortunately I was dressed inappropriately and I neglected to fill out the correct paperwork to receive the warm blankets. I was also asked to sit in a plastic torture device that the nurse called a "chair".

Anyway, Joan drank a nasty liquid, received an inoculation of irradiated sugar water and took a one hour nap. At the end of the waiting period she was placed into the scanner and took another nap wrapped in her wonderful blankets until the scanner was done.

That's it.

We received no information from the technician nor any paperwork or photos of the scan. Joan gave the blankets back and we left.

Our next appointment is one week from today where we will gain some understanding of the tests that have been done the last two weeks and I or Joan will be sure and report the findings to each of you. I will be bringing blankets to that appointment...

Joan's Bone Aspiration

2007-03-28T09:13:00.000-07:00

We had Joan's first session today to get more information on how much cancer she has in her body. We will not get the results for a week but this visit was tough and we knew it was going to be tough.

Basically a Bone Marrow Aspiration can be one of two procedures. Either way the Nurse Practitioner (Ours was Lauren) uses a small hand operated drill to drill into your pelvis. Once they are in there they will either extract only fluid through a narrow cannula, which is not too painful; or they extract the fluid, plus a sample of the marrow itself, plus a small bone fragment. That second one hurts and that is the one that Joan had done.

The procedure was done in a regular examination room with little fan fare. Lauren came in told Joan to lay on her side and expose her hip. Then the entire area is bathed in betadine or some antiseptic. After that a topical anesthesia is applied. None of this was scary of course but watching the nurse use a small hand operated drill to get into Joan's bone was excruciating for me. The nurses expected this and warned me that it was tough to watch. Joan seemed completely comfortable through the entire ordeal. While the topical anesthesia offered Joan some comfort initially, there is no way to numb the bone or marrow and she felt every bit of that.

After the drill had reached the correct depth Lauren transferred different needles into the cannula and withdrew all the fluid, marrow and even a small bone sample (see the picture). Finally, they slathered some of the marrow and fluid onto several slides and sent them off to pathology. For the rest of the day today and perhaps tomorrow Joan's hip will probably feel like she fell off the roof and on to her butt, but she is still an incredible trooper. The nurses both were blown away that she never winced while they drilled into her bones.

Tomorrow Joan has her PET scan which is pretty simple. They crank some sugar water into her veins and then follow it with a scanner much like an MRI. It will be a piece of cake for her to deal with that procedure after today! Both preliminary results will be available at her next appointment with Dr. Capone the Oncologist on Thursday April 5th.

I will be sure and send another update tomorrow about the procedure, but we will not know Joan's treatment options until the results of both of these tests are back. So keep praying for Joan, and while you are at it say a prayer for Tony Snow and Elizabeth Edwards too. By all accounts they are two of the nicest people inside the beltway, an area known for chewing nice people up and spitting them out. Joan and I pray for each of them everyday. We hope you will too.

Joan's First Appointment

2007-03-22T07:54:00.000-07:00

Joan had her first Oncologist appointment today since her being diagnosed with Lymphoma. Despite the surroundings, today's visit was a really good one. Joan has been diagnosed with a type of Lymphoma called Follicular Lymphoma. That means that it is a very slow growing lymphoma, in fact, the Doctor believes that Joan has probably had it for a couple of years. The best news of the day was that Joan caught this so early because of her persistence, that we are not discussing chemotherapy, but discussing less dramatic treatments.

So here are the details. We now know what Joan has - but we still need to find out how extensive it is. Therefore we are scheduling two more tests: a PET Scan to determine the current speed of the cancer growth and a Bone Marrow Aspiration to determine the progress of the cancer. A PET Scan or Positron Emission Tomography (PET) is a powerful imaging technique a lot like an MRI. They will shoot some radioactive glucose into Joan's vein and then track it. Quickly growing cells (like Cancer) love to suck up glucose so it is easy to spot the fastest growing cells and see exactly how fast they are growing. The second test is a little more painful I am sure. A bone marrow aspiration is basically getting a huge needle pushed through your flesh and into the middle of your pelvis where the doctor can then remove a sample of Joan's bone marrow. That sample will offer the doctors a view of how much the cancer has impacted Joan's system. Both of those procedures are scheduled for next week.

A little more detail on follicular lymphoma if you are interested... Dr. Capone tells us that FL can wax and wane for a person's whole life. The cells can grow and even regress on their own. There is some evidence that this may have already occurred in Joan's body as three years ago she had some lymph nodes in her bikini area grow and then seemingly disappear. The Dr. says that is very typical of FL. The proper way to begin treatment is to step back and decide if it even needs treatment. Many patients that suffer from FL in actuality never suffer. The nodes may grow and shrink on their own and never require any treatment because they do not affect any other functions of the body. That is kind of what Joan and I are shooting for.

When Follicular Lymphoma does require treatment there are two very different treatments available. One new method is what the Doctor called smart bombs. These treatments are still undergoing medical trial but have shown incredibly promising results so far. They are generally a protein strand that only interacts with certain types of cells, like those cancer cells in lymph nodes. If these treatments are smart bombs, the other treatment is carpet bombing: Chemotherapy. Joan is not scheduled for either of these treatments until we receive the results of the two tests that she will be going through, but unfortunately Chemo is still a possibility for her. We will discuss that when and if it appears to be a possibility.

Doctors have been taught for years that Follicular Lymphoma has no cure. There is no treatment or medications that can remove these cells permanently from your body. That sucks, but as Dr. Capone also said today, Joan, while very likely to die with Fallicular Lymphoma, will almost certainly not die because of it.