Seth's Info

Well I’m still in the hospital and feeling so-so. I had my endoscopy done Tuesday night and they discovered an ulcer in the esophagus wall. It was about 2cm in diameter. They decided to insert a feeding tube while I was still out, so since Wendnesday I have been eating high nutrition liquid food through my tube into my stomach. This is intended to give my ulcer a break for irritation. It runs up through my nose and down the back of my throat – it is not as uncomfortable as it sounds. I don’t taste the food, but I don’t mind for for now. They are planning on doing another endoscopy Monday morning to re-examine things.

The other issue is that I have developed “coarse” respiration, an occasional low-grade fever, and a wicked cough – all signs of pneumonia. My chest X-rays have back clear however, and they haven’t discovered a specific bacteria in my system. I am getting a couple different respiratory treatments to help things along. The worst part is the cough, since it keeps me up at night and just wears me out.

So, as you can see, staying in the hospital isn’t doing me any favors. Tomorrow will be a big day to determine what the next steps are. I am still hoping to do chemotherapy this week but am currently in no shape to do it.

Re-reading this entry, I sound more like an 80 year old than a 35 year old, I hope that isn’t the case next time.

That’s all for now.

Seth

It’s been another couple of crazy days. My scans showed that all tumors were stable (same size) which I was very happy to hear. I am confident that the tide will turn eventually.

My oncologist delayed chemotherapy while we treated and investigated my esophagitis. I got admitted to the hospital and got put on a pain pump, which has made a world of difference. I met with some GI doctors and got put on some anti-viral and anti-fungal medications to treat some of the common causes of esophagitis for chemotherapy patients. Depending on how things go, I may have an endoscopy done in the next day or two. I slept reasonably well Monday night in my narcotic state.

Things took a turn for the worse this morning when my resting pulse rate went up to near 200 and was erratic. I got moved to the 3rd floor for lots of drugs, testing, and analysis by the cardiac folks. I’m happy to report that my rate is now back to normal. The doctors call this condition atrial fibrillation. The jury is still out on what’s going on so hopefully I’ll have more to post later in the week.

Based on the way things are going, Jenny is going to stick around here for at least a couple more days. I am resting comfortably and not in a lot of pain, so I’m happy. I’ll have more to report on my next treatment soon.

Seth

I am currently down in Philly staying at my parent’s house. It’s been a rough week for me -- my esophagus has gotten much worse, as bad as it’s ever been. At times the pain is quite severe. I managed to get in to see the doctor yesterday while I was in for my C/T scans at Fox Chase. I got some IV fluids, and I am taking percocet and using a strong medicated mouthwash. Unfortunately I am able to eat very little. I am hoping things will improve before my treatment on Monday. Depending on the results of my scans, the doctor will reevaluate the chemo drugs I am currently taking. The doxorubicin is what is causing the espophagitis, and because I am nearing the lifetime limit of dosage for that drug, she may take me off of it.

The kids had a great time at Hershey Park on Wednesday. The day was a little much for me, and I spent my time moving from one shaded park bench to the next. I was also able to fit in a brief visit to SRI on Thursday and catch up with my co-workers. I wasn’t feeling great, but it was very nice to see everybody. My friend Ted came up to visit Friday morning and drove me down to the train station in Harrisburg (thanks Ted!) and I took the train to Philly from there.

I am hoping to be able to post some good news in a few days about my latest scans. Say a prayer and think positive thoughts, because I could really use some good news.

Jenny came down from State College today with the kids, so we are all back together again. Nathan is turning 3 tomorrow, so we’ll be celebrating that here with my parents (complete with a Fudgy the Whale cake from Carvel!)

That’s all for now, I’ll post again soon.

Take care,
Seth

It’s the end of a beautiful weekend here. We attended the State College Spikes game last night (the Spikes are a recent addition to State College, they are a Class A affiliate in the St. Louis Cardinals organization). The stadium is brand new and very nice.

My esophagus is acting up again, today is the worst it has been in some time. One of the drugs I am taking, doxorubicin, is known to “recall” previous side effects from radiation treatment. So every time I take the drug, it tends to produce similar side effects from when I had my radiation treatment. One person on the Sarcoma list serve we monitor likes to call radiation the “gift that keeps on giving” for this very reason.

I have never previously discussed the specifics of my particular cancer diagnosis, Malignant Peripheral Nerve Sheath Tumor, or MPNST. It is a subtype of a group of cancers known as Soft Tissue Sarcoma. Sarcoma, as a group, is relatively uncommon in the US, comprising about 1-2% of diagnosed cancers. MPSNT comprises about 5-10% of sarcoma diagnoses. If you do the math, this approaches 500 to 1,000 persons per year in the US.

One of the difficulties in researching MPNST is that it is a relatively recent term, replacing what were previously known as malignant schwannoma, neurofibrosarcoma, and neurogenic sarcoma. Additionally, because it is an uncommon form of cancer, the number of research studies and trials is limited.

The body’s nervous system is divided into the central nervous system and the peripheral nervous system. The central nervous system is comprised of the brain and spinal cord (which carries messages to the brain), while the peripheral nervous system is comprised of the vast network of nerves that carry messages to and from the central system. The cells that carry these messages are called neurons. One of the components of a neuron is the axon, a long fiber which carries messages away from the cell (see diagram below). The axon is protected by a lipid layer known as the myelin sheath. It is the cells of this nerve sheath that mutate in MPNST. (Interestingly, it is the destruction of large portions of the myelin sheath that characterize Multiple Sclerosis.) As evidenced by my own case, MPNST can be difficult for a pathologist to diagnose conclusively. My original pathologist diagnosed my cancer as leiomyosarcoma, but subsequent studies have indicated MPSNT as being much more likely.



One other interesting note -- up to 50% of MPNST diagnoses are associated with a genetic condition called Neurofibromatosis, also known as von Recklinghausen disease. I don’t have that genetic condition, so I fall in the half of cases with less certain causation. Since my original tumor was located with my abdominal muscle, I can only assume it was a nerve sheath within that muscle that mutated and grew.

If you are looking for more detailed info on MPNST I can recommend these 3 links

Liddy Shriver MPNST Page
Radiographics Case Study
Maxilofacial Center Page on MPNST

We're heading down to the Harrisburg area on Tuesday and Wednesday, and hoping to make it to Hershey Park. Hope everyone has a great week.

Seth

It's been almost a week since my last treatment ended and I'm starting to get my energy back. I've taken a couple walks and today even accompanied the kids and some friends to a kid's fair in town. We are planning a trip to Hershey Park next week, I'm hoping to have enough energy to keep up with the kids. I won't be riding any roller coasters, though.

I've got another set of C/T scans scheduled for a week from today. I'm trying my best not to think about it too much but it's a bit difficult. Hopefully I'll have some good news to report.

We continue to receive lots of kind and generous support from friends, neighbors, and family. This really helps keep Jenny and I going through all of this, and we continue to say "thanks" to all of you.

I've included a few pictures from our outing today. This is our family with our friends enjoying lunch.



Here are my three sons -- it's still hard to get Nathan to cooperate :)



Here is Jack, enjoying the moonbounce.



That's all for now, hope everyone has a great weekend.

Seth

I'm back in my giant boat of a Lazy Boy, and slept soundly last night. Thanks to Dad and my brother-in-law Dave for getting me home yesterday. I received lots of pictures from various people last week and thought I would share.

Our friends Tom and Joy, former neighbors in VA, visited us at Sea Bright last week with their 3 kids. We had a great time catching up.


Our 3 kids had a great time with my Aunt Betsy and Uncle John, who came down for a visit from Rhode Island. Here John is teaching Spencer how a well-timed wink can win over the ladies.


Here's our family's house in Sea Bright.


Here I am, not catching any fish.


We missed our friend Lara's wedding last weekend. Here are Jenny's friends Hilary, Jenn, Lara (looking quite stunning as the bride), and Lata. Our congratulations to Lara and Jason, sorry we missed the big event.


Lastly, here's me at Fox Chase this week, mustering a smile. Can't say I'm in any hurry to get back there, but I'm getting to know the staff pretty well and they treat me great.

After waiting for a day, I was finally admitted late Tuesday morning to Fox Chase. I got to spend Monday with Mom and visit my sister and my grandfather, so everything turned out fine. As a reward for my patience I was assigned a private room (there are only 4 in the whole hospital), which is very, very nice. My chemotherapy got underway yesterday afternoon, which means I should be discharged Saturday around noon time. So far I am feeling well and keeping busy with email, DVD’s, and reading. I try to take a walk every few hours, dragging my IV pole along. The picture below is of me and my friend Kurt down at the shore. I have some more pictures I'll post soon.


I was speaking to my Grandmother a few weeks ago, and she had recommended reading and memorizing some poetry for when I’m feeling to lousy to read. I don’t normally read much poetry, but I found a Pocket Book of Verse at my parent’s house. I have enjoyed reading through the various poems, you find a lot of snippets that are familiar and it’s nice to learn the poems from which they come. I have found two poems that struck home with me and my current situation. The first is a sonnet by George Santayana called O World. Santayana was Spanish born and educated in America in the late 1800’s. He was a prolific author, and is best known for his "Those who cannot remember the past are condemned to repeat it" from Reason in Common Sense. The sonnet reads…

O world, thou choosest not the better part!
It is not wisdom to be only wise,
And on the inward vision close the eyes,
But it is wisdom to believe the heart.
Columbus found a world, and had no chart,
Save one that faith deciphered in the skies;
To trust the soul's invincible surmise
Was all his science and his only art.
Our knowledge is a torch of smoky pine
That lights the pathway but one step ahead
Across a void of mystery and dread.
Bid, then, the tender light of faith to shine
By which alone the mortal heart is led
Unto the thinking of the thought divine.

I like this poem because it recognizes some of the limits of science and knowledge (i.e. we still don’t have a medical cure for cancer), and stresses the importance of faith and self-belief, which can take you long way when fighting a disease.

The second poem is well known and often quoted -- Invictus (Latin for “unconquerable”) by William Ernest Henley who wrote it from a hospital bed while fighting tuberculosis. This poem is much more stoic than the first, but if you are feeling kicked around and like the odds are against you, this poem is hard to beat.

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

As a side note, Timothy McVeigh quoted this poem as his final statement before his execution, inappropriate for a coward and murderer in my opinion. It upset a lot of people when he did it, but it doesn’t ruin the poem for me.

Well, enough poetry for now. If you have any favorite poems or verses, please send them my way. Hope everyone is staying cool, fortunately I’m stuck in the hospital till things cool off.

Take care,
Seth

It’s been a while since I’ve posted an update. We spent a wonderful 8 days in Sea Bright and had a great time. We had a number of friends visit and spend time with us there, and the weather was very cooperative. Jack, Spencer and I went fishing with my Uncle Alan and caught some fluke, and we got in lots of time at the beach. My back is slowly getting stronger, and I am finding myself able to do more and more. Jenny has since returned to State College with the kids, and I am now in Philadelphia.

I was supposed to get admitted to Fox Chase yesterday for my 4-day infusion, but the hospital didn’t have any beds available (it is a 100-bed hospital). I am currently waiting to hear from them about getting admitted today. The nice thing is that I was able to spend the day with my Mom instead, and visited my sister and grandfather as well. While at the hospital I did visit with my oncologist. I will be getting another C/T scan in 3 weeks to see how things look. She also is increasing my ifosfamide dose since I tolerated the first round of AIM so well. Hopefully this won’t cause too much trouble, but I’m willing to put up with the side effects if it is going to help shrink the tumors.

In other news, it looks like Jenny will be starting some part-time work at Penn State in September. The University conducts a lot of childhood obesity research, so this is a chance for Jenny to use her nutrition education and experience as a parent in a professional environment. Jack is attending Flag Football camp this week and will be playing in a Flag league this fall. He is a big football fan and is very excited about getting to play.

I am way behind on returning emails (thanks to my vacation), but I plan on catching up while in the hospital.

Take care,
Seth