Home!

I've been getting quite a few call from people wondering what is going on and I realize that staying on top of your health progress blog is pretty important. I'm writing this post from the comfort of my living room after enduring a full day of prods, pokes, yanks, scans and please lie perfectly still for 4 hours.

The great news is that the whole array of additional Lymphoma tests from other body systems all came back negative so the cancer has not spread throughout the blood system. Nothing in my bone marrow, nothing in my spinal fluids nothing in any of the 9 blood tests. Seems like it has truly been caught in its infancy. But it will still take two years of chemo to keep it out.

Now all the doctors can go on their spring breaks with their families without worrying about me. And I have a whole week of just chilling and letting my guts get back into a semi-normal state while Mary and Marlee wait on me hand and foot and provide me anything I need at any time just like the nurses did. Wait... what!?

Truth be told, I got no tubes sticking out of me, I am able to walk up and down stairs slowly and I feel relatively good, especially compared to all those other people suffering and enduring the hard core treatments. I'm not supposed to lift anything over 10 pounds so that bucket of hammers is staying put right there in the hallway where it sits! Really the only pain I am experiencing is a tightness in my chest every 4 hours when the Vicodin wears off. I'll soon switch to ibuprofen and will feel like normal in a couple weeks.

That normal won't last too long. After Spring Break, I'll meet with my gang of doctors again to plan the next course of action. They assure me that my esophagus, or at least a major chunk of it, is a short-timer. So I plan to celebrate all the pleasures of swallowing for the next week or two.

What are you doing for Spring Break?

Hey Doc, why so glum?

You know, it can be so much fun reporting good news. Yesterday I was in super high spirits because the prognosis had so dramatically flipped and in such an unusual way. It makes for a really great story! The irony that a second cancer turns out to be good news was a pretty irresistible story device. But, dear readers, the other shoe may have dropped.

Dr. Scott, my Hematologist made a surprise visit to my room yesterday afternoon. I presumed that he had not yet heard the good news because he looked a bit pale and slightly less joyous than the last doctor who walked through that door. Rather than assume the the four legged mammal with a mane was a horse, Dr. Scott had waited to see the final pathology report on the lymph node biopsy. Turns out it was a zebra.

Yes it was indeed lymphoma, a second primary cancer, but it was not the expected kind that neatly explains my other symptoms and gives me an overall positive prognosis. It's called, "acute lymphoblastic lymphoma". Dr. Scott says that we need to set aside thinking about he esophagus tumor for a bit and focus on the new cancer because between the two of them, it is the more aggressive one. Man, that Dr. Scott is a real buzz kill!

He wasted no time and pretty much unfurled his bone marrow biopsy tool kit right there in my room. I'll spare the graphic details except to say that to get a bone marrow sample, you have to poke a sharp object inside of a big bone and those suckers (bones) are pretty hard on the outside.

I was also squeezed into the MRI schedule for the evening. They needed to look at my brain and although I have not yet read the brochure on acute lymphoblastic lymphoma, I am presuming that the purpose of an MRI is not to see how smart I am.

Since I am no longer hooked up to tubes, I got to ride the wheelchair down to radiology. You've all probably had MRIs but it was all new to me.

They start out by telling you that it is real loud , like jack hammers but the good news is that they give you headphones so you can listen to music. The choices were, Christian rock, country, jazz, classic rock, oldies or classical. This did not bode well! I chose classical because I thought they couldn't mess that one up... but I was wrong. Do you remember that scene in A Clockwork Orange where they make him listen to his beloved Beethoven while administering this drug that would make him sick whenever he had an association with that music? I couldn't stop thinking about that.

First of all, imagine an AM radio playing elevator music through airline headphones. That is the fidelity we are talking about. They tell you that the space is really confining and that it is important not to panic. And then they give you a panic button. So, of course, all I can think about is "not panicking". And then... they were not kidding about it being loud and obnoxious. And just when you get used to that loud obnoxious sound, it changes to a different loud obnoxious sound. And it has a rhythm and that rhythm is completely different from the rhythm of the music which you can barely hear. You know how when you walk while listening to music, you have to adjust your stride to the rhythm of the music? Well you can't adjust the rhythm of the MRI so the music only adds to the stress. Don't panic, don't panic! (Note to inventors... electronic music that adjusts to and matches the rhythm of the MRI)

After I was back in my room, Abby made a surprise visit and we watched "The Office" together and we laughed and began adjusting to the new normal. Whatever that might be.

Jabba the Hutt phase has ended.

The weirdest thing about being tied to a hospital bed is that it feels like you are literally tied to the bed. Twist one way or another and you find yourself in knots. That is not altogether different from working in video production. Especially if you are me.

The biggest inhibitor of movement is the chest tube. I've watched enough medical dramas on TV to know that there is something called a "chest tube" but I never knew exactly what it was. Now I know. It is the thing that makes it impossible to do the simple things that you want to do like get out of bed, reach for your remote control or scratch the itch on your lower calf muscles. To resolve this we have what we refer to in the "patient business" as the "call a nurse" button. You'd think it was only for those "I've fallen and I can't get up" moments but actually it is used more for the "my room-service menu is 3 inches from my fingertips" moments. All the people who work here seem to have no problem trekking over here for the most mundane of needs! Bless the nurses and PCA's on this floor!!

This morning they pulled both my chest tube and my epidural. I'm pretty much cordless now except for the heart monitor and that item is portable. (I'm a bit skeptical that that bundle of wires really does anything at all since it's just taped to my chest.)

Hey, I think I'll get up now and brush my teeth without calling anyone first.

The good news keeps getting better

I finally met with Dr. Shabahang last night. He told me he saved me for last in his rounds because he wanted to end his day on a positive note. As mentioned in the previous post, the infected lymph nodes in my mediastinum turned out to be lymphoma and not esophagus cancer cells which pretty much rules out stage 4. He said it was very rare to have two distinct and unrelated cancers appear at the same time, both seeming to be in early stages. It raises the possibility that the infected lymph nodes surrounding the original esophagus tumor could also be lymphoma... a very treatable form of cancer. If that were the case, it is possible that the original tumor is only stage 2 or possibly even stage 1!

Whether stage 1, 2 or 3, it still means major surgery. He wants me to consider healing from this one and going right into the second one, saving chemo and radiation for later. This would remove all the cancer from my body if it is discovered that the cancers are both in early stages.

The surgery is called an esophagectomy and I will leave the description as a link so most of you can just not click on the link and skip the description. It sounds pretty awful. I can live a pretty normal lifestyle except for eating and sleeping. Accommodations for those activities will be required. There are two approaches:

• A trans-hiatal esophagectomy (THE) is performed on the neck and abdomen simultaneously

• A trans-thoracic esophagectomy (TTE) involves opening the thorax (chest).

I'm leaning towards the latter. But enough of that!

Yesterday and today they've been gradually pulling out tubes and hoses so it is a bit easier to get around. I can't tell you how enjoyable it is to stand upright, brush my teeth and walk around. Not to mention "dangling". There are still 2 tubes that will have to come out before I go home. One that delivers pain medication via an epidural and a chest tube that drains away liquids in the chest cavity. I know, TMI... but you chose to read this and I'm just passing along what I am learning as a surgery virgin.

A long day

I'm posting today from Lacks. Cancer Center, 4th floor. I was going to wait until I heard something from Dr. Shabahang but I think he must have had a long day. I was his first surgery of the day and evidently it went long. I imagine I'll get the full story first thing in the morning.

But I did hear a few unconfirmed details. There is good news and bad news but the good is much better then the bad.

First the bad. The infected lymph nodes in my chest turned out to cancer. Sounds pretty bad, right? Well the good news is that it is a different cancer. I know that still sounds bad but apparently it my be early stage lymphatic cancer (which they chopped out while they were in there). So the really good news is that it is also possible that the infected lymph nodes that are near the esophagus tumor may also be early stage lymphatic cancer and NOT metastasized esophagus cancer. There is some possibility that this makes the original tumor stage 2, and not stage 3. That would be great news indeed! Again, this is unconfirmed, second-hand information and I'll need another surgery to get at those lymph nodes (sooner rather than later) but it would notch up my prospects significantly. Stay tuned!

Because this morning's surgery changed from biopsy to cancer eradication, I was awakened at 1:00pm instead of 9:00 am. I was pretty groggy and confused as were my waiting loved ones. I just remember thinking that all the staff bustling about in the post anesthesia recovery room were blonde women with pony tails and I was very short of breath, tangled in wires, tubes & cables and very sore. There was also an x-ray taken right from the gurney. I barely remember the ride up to my very sweet room at Lacks.

I am brand new at this surgery and over-night stay busines (TMI warning- skip to next paragraph) and had to learn out how a catheter works. I had to ask the nurse how to pee.

I also had one of those buttons that allows you to self-administer pain relief. I had an IV in each arm (a redundancy required for robot surgery because if one goes bad... you got a robot up inside of you that takes some time to extract). I was hitting on that thing every 10 minutes because my chest hurt so bad. I could not get comfortable. I kept adjusting the bed, my gown, and my position in the bed to find a way to contort into a sleeping configuration. Finally in a lucid moment I remembered that the pain killer was not coming through my arms but through my spinal column. Sure enough, all that medicine was not going to the place that hurt. It was not the incisions that ached it was my shoulder muscles. Apparently they do robot surgery with your arms contorted and bound up above your head. The procedure had gone way long and the pain I was experiencing was radiating from my stretched out shoulder muscles. Once we figured that out they put a mild pain reliever in my IV bag and I felt great!

The message on the message board in my room stated that today's goal was to sit up and "dangle at bedside". This was referring to my legs in case you were wondering. I made that goal in spades. I stood up and then sat down in a chair for a couple of hours!

Now that I have finished eating my first meal in 24 hours consisting of of strawberry gelatin and chicken broth, I'm getting a little Benedryl in my IV for dessert. It is supposed to sooth this insane itching on my belly and my back. An added benefit is that I'm feeling a bit sleepy. Can't wait to see what tomorrow brings!

This changes everything

After a many year hiatus, I've decided to reactivate my blog to talk about a life-changing event in my life and my new forced perspective. Here is the email message I sent out to my family to announce my news:

I had an endoscopy a couple weeks ago to look an acid reflux problem I was having and as part of that, they do a biopsy. The biopsy revealed some cancer cells on my esophagus. So they did a CT/PET scan and I just got the results a couple of days ago. The cancer has already progressed to stage 3 and possibly stage 4. That was not the news we wanted to hear! The good news is that this more advanced stage rules out surgery. Just the idea of that fairly radical surgery was giving me a lot of anxiety. So I'll be making my stand with chemotherapy and radiation. I have my youth and vigor working for me and cancer science is improving all the time so there is lots of hope. But it is definitely a WTF moment. Physically, I feel perfectly normal. Emotionally, I'm pretty shaken up as you might imagine. It kind of changes everything.

On Friday morning I'll know more as we are meeting with a panel of experts to explain the nature of the cancer and determine which course we take. Esophagus cancer has a reputation for being pretty aggressive and we are determined be equally aggressive in getting to a good outcome.

Friday morning came and I brought Mary and my sister Betsy to meet the medical players in my drama. First there was Coralyn, an RN who coordinates all my care. She was terrific and made me feel like I was in good hands. Then we met Dr. Scott, an Internal Medicine specialist who would coordinate chemotherapy. He did a brief examination and answered some basic questions. The most difficult was the question of "staging". The PET scan had revealed that the esophagus cancer had spread into the adjacent lymph glands (stage 3) and it also showed "hot spots" both on the liver and in lymph nodes in mediastinum (the chamber near the entrance to my lungs). If these hot spots proved to be cancer, then my cancer would be considered stage 4.

This was a pretty big deal because stage 4 is considered untreatable and terminal and stage 3 had considerably more hope. The next doctor, a Surgical Oncologist, Dr. McCahill explained to us that if it had spread to other organs, surgery would no longer be an option and surgery was the key to getting rid of the cancer. He went on to explain that the hot spots presented like cancer but they could be other things. In my favor, he remarked that it was unusual that a tumor as small as the one in my esophagus could spread so far without me feeling more of the symptoms. If I was in stage 4, I should be dragging my ass around in exhaustion. This gave us some hope! If it had only progressed only to the local lymph nodes, then surgery would still be an option. It is major surgery but the survival percentage rate is in double digits.

Dr. McCahill went on to explain that my next step would be to biopsy the hot spots to rule out (or in) stage 4 and thus map out my treatment. Since the mediastinum is hard to get to and requires a thoracic surgeon, we would do the liver biopsy first. If the pathology report showed cancer, that would be it. I'm stage 4. No surgery or radiation. On to Chemotherapy to try and slow the growth of cancer cells in a systemic approach. If the pathology report was negative for cancer, we would proceed to schedule the thoracic surgeon to biopsy the nodes in my chest.

I briefly met the Radiation Oncologist, Dr. Padula, who mentioned that radiation was only a possibility if the liver biopsy was negative and he would talk to me later if this was the case.

I then had consultations with a Dietician (Amy) and a Cancer Resource Specialist, (Alina) who coordinates non-medical cancer issues for me.

A liver biopsy appointment was set up.

The morning of the liver biopsy did not start well. We arrived at 6:30am and discovered I was not on the list. We waited for nearly an hour and listened to a substitute receptionist make multiple calls to try and figure out where I was supposed to go. They finally tucked me into an examination room, started an IV and a new chart for me. Eventually word came up from radiology to bring me down for a ultrasound-assisted liver biopsy.

Here is the message I sent out at the end of the day:

First of all, the liver biopsy was pretty grueling. It took much longer because the spot they were going after was small and just under my ribs. Instead of getting to sleep through it, I had to stay awake and hold a deep breath over and over so my lungs would push my liver into an accessible position. It took much longer than expected and they didn't get it on the first try.

After 4 hours of recovery, I met with my thoracic surgeon, Dr. Bruce Shabahang to discuss the chest spots that showed up in the PET Scan earlier. It was a great meeting. He had spoken to someone who had a preliminary look at the liver biopsy who said he doubted it was cancer. Dr. Shabahang said he was 90% sure it was not cancer. We won't know for sure until maybe Friday.

He then talked about the infected lymph nodes in my chest. He said it was somewhat unlikely that the cancer from the small tumor on my esophagus could travel all the way over there without infecting any of the lymph nodes along the way. It could be a 2nd kind of cancer but he said it was a good possibility that it was a benign fungal infection. That would explain my otherwise excellent health.

The only way to know for sure is to biopsy them. The standard way to do that would be to go through between the ribs and it is a very invasive procedure and they cut little pieces without having a good look at them in context to the body. But fortunately, he is a nationally recognized expert on the da Vinci robot surgery method. They cut 3 holes in the torso; two for robot arms and one for a camera. They deflate a lung and he has a clear shot at cutting out the infected lymph nodes by remote control, much like plucking grapes. He re-inflates the lung and then, viola! 2 days in the hospital and then I can go home.

If the nodes are cancer, I'm back to being stage 4 which has very low odds of survival over 5 years. But if they are not, I will be downgraded to stage 3 and they will start me on chemo and radiation and I'll be a candidate for the surgery which has much better odds for survival and even a complete cure! That surgery is pretty major- if you read about it you'll wonder why I am so excited about it- but that is a topic for another time. For now I am on cloud 9! I'm back in the game!!

So yesterday I got the pathology report from the liver biopsy and as expected, it came back negative for cancer. My robot surgery is scheduled for 8:00am on Monday morning at St. Mary's Hospital. I'm told I'll stay for two nights after that. I'm pretty optimistic that the biopsy results for that one will be negative as well.