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.

The PET Scan is Complete

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

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

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.