An update

It's been a month since our last posting - here's a short update:

My whole-liver radiation treatments came and went without too much difficulty.  I was treated twice-a-day for two weeks (a total of twenty treatments).  To improve accuracy (actually, to limit radiation dose to nearby, normal tissue like my right lung and kidney), I held my breath during these treatments: we did ten, 40-second breath holds at each session.  Not too difficult, but thank goodness for all that swimming in my past (a long time ago now...).  I did have some minor nausea after each treatment, but this was well controlled with medication.

As an added bonus, at the end of my radiation, I had a bout of shingles on my left chest (i.e., a reactivation of chicken pox).  Usually, this only happens to older adults, but can also happen to younger people, especially when the immune system is compromised.  It's very unlikely that this was directly caused by my radiation.  Rather, it was probably the general stress of all the treatments that I've had.

Shingles was as advertised (i.e., quite painful) but fortunately, it only lasted a few days and I had some good pain medication.  After this, Gwyneth and I took a short vacation to Bedford Springs, Pennsylvania (William stayed with George and Joan).  This was really wonderful and much needed!  Photos are here.  Shortly after this, we were all able to go to Houston to see my family for Thanksgiving and had a great time.

After we returned to Baltimore, I started on a daily, oral "biologic" agent called Sutent (sunitinib).  This drug inhibits several cellular receptors that are important for tumor blood vessel growth and also for tumor growth.  Unlike most traditional chemotherapies, this treatment is oral (so no IV infusion is necessary) and the side effects are pretty mild.  I have had some intermittent nausea and fatigue but overall, I've felt quite good.  We'll stay on this therapy as long as my regular CT scans don't show tumor growth.

That's about it!  We're looking forward to Christmas and William just had breakfast with Santa at the zoo; some video is here.  As always, we're so very thankful for your prayers and support.
Robert and Gwyneth

Some more radiation...

On my last CT scan, we were very happy to see that my lungs looked quite good.  Unfortunately, we did see new nodules in my liver.  While we did not biopsy these lesions, their appearance - together with my history - certainly suggests that they're from my cancer.

You'll recall that I had whole-lung radiation in August (we treated my entire lung fields, from my neck down to mid abdomen).  Because the diaphragm is domed, the right lung drapes over a portion of the liver.  As a result, when we were treating my lungs with radiation, the upper half of my liver also was irradiated.

Interestingly, my liver lesions appear to be in the low part of the liver, the portion that was not irradiated.  So, there is some circumstantial evidence that radiation helps to control my tumor (otherwise, we would expect these lesions to be more widely distributed throughout the liver).

After talking with my doctors at Hopkins and elsewhere, we've decided to pursue a course of whole-liver radiation.  While this is not a typical radiation treatment, it's not unheard of and - in my case - I think that we have a sound rationale for choosing it.

I'll start treatment on Monday and continue for about 2 weeks.  We don't expect major side effects during treatment (I'll likely have some fatigue and mild irritation of my stomach).  Importantly, we've chosen a radiation dose that will minimize the chance of serious liver or lung damage following my treatment.

Certainly, we're still concerned about disease that might be elsewhere in my body (even though there's nothing that we can see on imaging).  We'll likely start a drug to address this concern after my liver radiation is completed.

As always, we really do appreciate your prayers and support - thank you again,
Robert and Gwyneth

PS: William has a really terrific Halloween costume for today (made by Gwyneth!!) - we'll post pictures soon!

Back home after my VATS procedure

Everything went smoothly with my lung resection last Wednesday and we're happy to be back home.

While I was hoping to be discharged after 24 hours, I ended up staying in the hospital for a total of three days. Thankfully, we had a private room and Gwyneth could stay with me.

For your lungs to stay inflated, there needs to be a vacuum in the "pleural space" between the lungs and the chest wall. If air gets into this space (i.e., a pneumothorax), then the lung will collapse (and not work very well...). Fortunately, you have two, separate pleural spaces: one surrounding the left lung and one surrounding the right. So, even if you develop a pneumothorax on one side, the other side should work just fine.

Unfortunately, shortly before discharge, I developed an air leak from my left lung into the pleural space. My pre-discharge chest x-ray on Thursday showed that my left lung was 50% deflated (naturally, I didn't get to go home!). Instead, we placed a thin "pigtail catheter" into the pleural space and applied suction (to remove the extra air). Later, as my air leak improved, I didn't need suction anymore - a small, one-way valve was enough (to allow air to get out, but not to leak back in).

On Saturday, I left the hospital with this "Pneumostat" value and we spent one evening on Cape Cod with William and my parents. Not quite as much vacation as we had hoped for, but not too bad. We drove back to Baltimore on Sunday.

As of today, my air leak seems to be gone. Over the next couple of days, we'll close off my catheter, check a couple chest x-rays, and then - if all looks good - pull it out. Fortunately, it's not painful and I've already recovered quite well from surgery (although, yes, I'm still a little sore).

As always, thanks for your prayers and support!

Robert and Gwyneth

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Update on Thursday, September 17:

We removed my chest catheter today, my lung is fully inflated, and we're doing well - thanks again!

More surgery this week

We're happy to report that my whole lung radiation treatment went very smoothly. I had a little irritation of my esophagus (i.e., some discomfort with swallowing), but that was all. Overall, I've been feeling much, much stronger over the last several weeks. At the end of chemotherapy in June, I had about 20 pounds of extra water-weight (edema); fortunately, that's gone now!

We finished on August 14th and then went on vacation for ten days in Canada. Gwyneth's family's cottage is right on the Ottawa River, so William had a terrific time playing in on the beach (nearly all day long...)
and we actually got him to ride in the canoe.

More photos are here.

A couple of days after we came home, I had another followup chest CT. Thankfully, this was quite good - my only visible disease was one, one-centimeter nodule in my left lung. As this is the only cancer that we can see, it's possible that I'll benefit from having it surgically removed. So, we saw my thoracic surgeon in Boston last week (the same one who did my right lung biopsies in February) and are scheduled for another surgery on Wednesday, September 9th.

This will be a video-assisted thoracoscopic surgery (i.e., a "VATS" procedure). This is very similar to laparoscopic surgery - except that it will be in my chest instead of abdomen; I'll have three small incisions between my ribs where the instruments and camera will be inserted. In February, I was out of the hospital after just one night and had a very easy recovery. We'll hope for the same this time!

We were planning on travelling to Houston to see my parents this week, which obviously has been preempted. However, thanks to the flexibility of Southwest Airlines and the generosity of the Helm family, my parents will be flying up to Boston on Tuesday and we're all going to spend the week at the Helm's vacation house on Cape Cod. With current highs in the 90's in Houston and the 70's on Cape Cod, this may not be such a bad trade (despite the three new chest wounds that I'll be getting...). Yes, we'll beware of the sharks.

Bottom line, this surgery is good news (i.e., we wouldn't be doing this if I'd not had a good response to my recent chemotherapy and radiation). As always, we very much appreciate your prayers and support!

Robert and Gwyneth

Whole-lung Radiation

Sorry for the delayed update! It took us some time to decide what (if anything!) to do next.

Ultimately, we've decided to pursue a course of whole-lung radiation therapy. It is - as the name implies - radiation treatment to my entire lungs. Most commonly, this is done in pediatric tumors such as Ewing's sarcoma and Wilm's tumor. To be frank, there is no specific data to support the use of this treatment for my tumor. But, then again, as no one is entirely sure what my tumor is, that's not at all surprising! We spoke with radiation oncologists at several centers who agree that this is a reasonable treatment to pursue.

Because we're treating such a large area, the total radiation dose is quite low (I'll only receive twelve daily treatments - compared with thirty when my lymph nodes were treated last winter). Also, the amount of radiation received each day is slightly lower than normal. So, I should have few/no side effects during treatment. Most likely, I'll have no chronic side effects either (although there is a risk of reduced lung function).

We had some good imaging results this week. A CT scan on Friday showed that my lungs were remarkably clear. I have only one, 1 cm lung nodule (that's been stable for a few months). The rest of my lungs were clear (no nodules, 'infiltrates', etc.). While this doesn't rule out disease that we can't see (that's why we're pursuing more radiation...), it certainly is a very good result. In addition, no disease was visible elsewhere in my abdomen or pelvis. The CT did confirm that my spleen is - in fact - gone (it's nice to have an honest surgeon). Last of all, to exclude other systemic disease before I start lung radiation, I had a screening brain MRI that was termed 'unremarkable' (I tried not to take offense at this).

So, I'll start my radiation today, we'll finish in a couple of weeks, then we're off for vacation! As always, thank you for your prayers and support,

Robert and Gwyneth

Spleen Pathology

The pathology report from my spleen came back yesterday. Overall, it was pretty good news.

Since starting chemotherapy, I had several new, 1-2 cm nodules appear on CT-imaging of my spleen. These nodules turned out to be clotted blood (technically, "organized hemorrhage"). Also, with the help of some special staining techniques, the pathologists were also able to see some small clusters of tumor cells (these were microscopic) within the spleen.

So - bottom line - there was tumor in my spleen, but not very much of it. The "big" nodules that were seen on imaging were actually caused by bleeding.

Why did I have bleeding in my spleen? Presumably, the bleeding was caused by the small tumor deposits. This may be similar to what happened in my lungs this February: CT showed small nodules of tumor surrounded by larger areas of bleeding. This just seems to be a characteristic of my tumor.

So, this doesn't change the plan much. What is the plan? Still working that out. We should know in a week or two.

We're very happy to report that I'm feeling great! My belly is only a little sore now (no, I'm not doing sit-ups yet, but then again, I haven't done those in a while!) and I'm getting around almost like normal. I went to work for a few hours on the last couple of days, but still keeping a reduced schedule so I can get some extra rest.

It's a beautiful evening - Gwyneth and I are (finally!) going out for crabs. We had intended to do this on June 20, but I ended up in the Emergency Room instead! We'll have better luck this time.

Thanks for your support and prayers,

Robert and Gwyneth

Recovering well at home

We've been home for about 2 days now (since Sunday afternoon) and I've continued to steadily improve following my splenectomy last Thursday.

I'm genuinely feeling hungry now (vs. eating because I'm supposed to!), my digestive system is back in action (not otherwise specified...), and I'm able to move around much more easily and with a lot less pain (I'm still taking ibuprofen and a little oxycodone). I'm happy not to have any drains or tubes left in place. In fact, I don't even have a bandage over my abdominal incision - it's intended to be left open to the air. Hard to believe that just five days after all of that surgery, I only have to wear a single, regular Band-Aid (covering my drain site incision)!

Gwyneth and Joan have been taking good care of me (and William!) over the last couple of days. But, I'm on my own today and have been able to shower, make breakfast, get up and down the stairs, and pick up around the house without a problem.

Thank you, as always, for your support and prayers!

Robert and Gwyneth

Continuing to feel better

Happy 4th of July! We have a terrific view of the Baltimore harbor from my hospital room - should be great for fireworks this evening.

Gwyneth and I both slept pretty well last night (of course, someone walks in, turns on the lights, sticks me with a needle, takes my vital signs, etc. every hour and a half, all night long). I'm continuing to feel better today. I had some soft but solid food this morning (oatmeal, a banana, yogurt, and coffee) which seems to have gone down well, we walked around the unit two times, and I've been sitting in a chair for most of the morning. It's really getting much easier to move about.

William and Joan came for a visit. As usual, William was full of energy and not phased at all by the 'strange' environment here (photo taken while he was running laps around my chair):

I've been unhooked from my IV pole, so all I have left is my surgical drain, which isn't too bothersome (I had a similar drain in place for 6 weeks after surgery last fall). This one should come out before I go home. Thanks again for everything!

Robert and Gwyneth

Splenectomy went well

We're happy to report that yesterday's operation went very well!

The procedure was at 2:30 in the afternoon and took about two and a half hours. But, between anesthesia preparation, recovery, etc., I was away for five hours total. Naturally, I was asleep for most of this, but poor Gwyneth had to sit around for all that time!! Gwyneth's friend Rosemary Duvinage and her mother Joan helped to keep her company in the waiting room.

After surgery, I woke up with quite a bit of abdominal pain. Fortunately, the recovery room nursing team was very agressive and provided lots of pain medication, so I was much more comfortable within an hour or two. We were able to go up to my hospital room at about 8:30 PM.

As usual, I had several extra tubes coming out of me after surgery. One IV (for pain medication and fluids), one tube going through my nose and into my stomach (a nasogastric tube), one tube in my bladder, and one tube to drain fluid from the surgical bed (coming out through the skin). As you might expect, it's a little hard to move around with all of these hooked up to bags, pumps, suction, etc.! We were able to remove the nasogastric tube and bladder catheter early Friday morning (and I'm much more comfortable for it!!).

My incision runs from the bottom of my sternum (breast bone) to my belly button - about eight inches long. The dressing is still on, so I haven't actually seen the incision, but I'm told that they did a very nice job sewing me up.

Today, I'm only eating ice chips and taking sips of water. After abdominal surgery, your digestive tract generally shuts down for a while, so you have to slowly get it restarted. I'll have liquids tomorrow (Saturday), and solid food on Sunday. Hopefully, we'll be able to go home on Sunday, but we certainly should be out by Monday.

Thank you again for your support and prayers!

Robert and Gwyneth

Surgery on Thursday

A brief update on my treatments:

I've recently finished five cycles of chemotherapy (gemcitabine and taxotere, every three weeks). Overall, we weathered this treatment well. I did gain about 15 pounds of water weight (although I do hide it reasonably well!!). Also, last week, I was pretty sick with what seems to have been pneumonia, but I've mostly recovered now.

We're happy to report that my lung nodules have responded very well to the chemotherapy; my recent chest CT's have looked very good. However, at the same time, I have new nodules in my spleen. These were not visible before my chemotherapy began and have been gradually enlarging. Certainly (without having actual tissue to look at) we can't be sure of what these are, but cancer is a major concern.

So, I'm scheduled for a splenectomy at Hopkins this Thursday as both a diagnostic and potentially therapeutic procedure. While this is significant abdominal surgery, it's not a terribly complicated procedure, so we expect that I'll do well. I hope to be home within a couple of days.

Thanks again for your thoughts and prayers - we're very appreciative as always!

Robert and Gwyneth

A Rough Week

Time flies (yes, even when you're getting chemotherapy...) - it's been a month since our last posting!

We finished cycle #4 finished without incident and were able to take a short vacation in Rehoboth Beach - had a great time:

As for cycle #5, everyhting went fine with the chemotherapy itself. Unfortunately, starting last weekend, I got pretty sick: mainly high fevers and fatigue. On Saturday, I had my first trip to the Hopkins emergency room (which, believe it or not, was not an entirely painful experience!!). My white blood cell count was fine and an infectious workup (chest x-ray, blood cultures, urine cultures) was unrevealing, so I went home on antibiotics.

Unfortunately, on Monday, I still felt really bad and so I got a CT of my chest, abdomen, and pelvis (to look harder for some site of infection). While my chest x-ray had looked normal, the CT suggested that I had pneumonia. I was admitted to the oncology center and fortunately, started to feel better by Tuesday, when I came home. I had a bronchoscopy on Wednesday (with washings and biopsies) to try and diagnose the cause of this pneumonia.

I'm home now and - importantly - am definitely feeling better (I haven't had a fever in several days). Given how terrible I felt, I'm being good and staying put for a few days!! Very happy to be on the mend.

Thanks for your continued thoughts and prayers,

Robert and Gwyneth

Done with Cycle #4 Infusions

Last Thursday (May 21st), I finished my cycle #4 infusions. Overall - with regard to side effects - I'm happy to report that it's been more of the same.  We're getting pretty used to the routine.  I have some mild fatigue and a little nausea on the day of infusion.  Then, a couple of days later, I'll have more fatigue, muscle aches, and chills for 1-2 days.  After that, things are back to normal. 

One new side effect: I've had some swelling (edema) of my left leg.  Overall, this is not too surprising.  I had surgery as well as radiation to my left groin, both of which can make it harder for fluid to drain back out of the leg (due to damage to the lymphatic vessels).  As for why this is starting now, we have some suspicion that the chemotherapy may be causing inflammation where I had my radiation treatment.  Not sure if this will be permanent or not, but regardless, it's been very manageable.

We're planning a trip to Rehoboth beach next week (thanks to the Sarsfield family, we have a great condo to stay in!).  Should be a lot of fun.

Thanks - as always - for your continued support and prayers!

Robert and Gwyneth  

On with Cycle #3

On Thursday, I started my third cycle of gemcitabine and Taxotere. So far, things are about the same as before: I was a bit fatigued Friday and Saturday, but am feeling fine today. Should continue to feel well until Sunday next week.

On a positive note, I had a CT scan last week to check on how I'm responding to the chemotherapy. My lungs looked much better than before we started. Most all of the 'infiltrates' that we saw previously (caused by bleeding from tumor) are gone. Also, the visible tumor nodules are smaller (but still visible).

This suggests that the chemotherapy is doing something good for me and so, I get to keep going. We're currently planning on around six cycle of chemotherapy (which will take us to mid-July).

We went for a picnic at Sherwood Gardens today (with my friend Nishant and his parents). Given my bald head, I'm very happy that it's finally warm outside!





Thanks again for your support and prayers!
Robert and Gwyneth

Cycle #2, Day 11 (Happy Easter!)

We're half way through my 2nd chemotherapy cycle. All of my infusions for this cycle are done (I only get drugs on day #1 and day #8 of each 21 day cycle). So far, I've been feeling quite well. However, as of now, I'm starting to get the usual day #11-15 muscle aches, fever, chills, and fatigue. Nothing terrible, but not too fun either.

A notable event early last week: I had my head shaved! There's a shop in the Hopkins oncology center that does free head shaving for patients (what a deal!!). Here are the before and after shots:


So far, we're happy with the bald look. But, it would be nice if the weather was a little warmer (it does get drafty...).

William, Gwyneth, and I spent Easter with Gwyneth's family in Bethesda and southern Maryland. Although William was not very impressed with the Easter bunny, he did enjoy hunting for eggs today.



Hope everyone is well and thanks for your continued prayers and support,

Robert and Gwyneth

Cycle #1, Days 8-17

I've not received any chemotherapy over the last week (nor will I until April 2nd, when Cycle #2 starts). A brief update on what's been going on:

I received steroids (dexamethasone) for three days during my last infusions one week ago. Frankly, these made me feel really, really good. I had plenty of energy, no nausea, and no aches or pains. Unfortunately, long-term steroids are bad for you, so I was off of these by Saturday.

Over the weekend, I definitely started to feel worse: more tired, more muscle aches, and also - interestingly - change in taste (dysgeusia). I currently do not taste sweet or sour very well. Sadly, both coffee and wine are really unpleasant! As an aside, the whole 'tongue taste map' thing that you learned in elementary school - not true.

I also had a fever on Sunday and Monday (to 100.6 F). This, in and of itself, is not a problem (I wasn't feeling all that poorly). But, fever can be a sign of infection. If you have a bacterial infection and, at the same time, a weakened immune system (more specifically, if the number of bacteria-fighting white blood cells - neutrophils - are low) then bacterial infections can be very dangerous.

So, because of the fever, I had to go to the chemotherapy infusion center on Monday to have my blood counts checked. Fortunately, my neutrophil count was very high (it was 3000 cells/microliter - you have to be below 500 to count as 'neutropenic'). So, nothing terrible to worry about. I'm getting Neulasta injections (a white blood cell stimulant) with every chemotherapy cycle to minimize neutropenia and infection risk.

As the fevers were accompanied by general achiness and happened shortly after my chemotherapy infusions, they were likely just a side effect of the chemotherapy. Unfortunately, this may happen with every cycle. We'll just have to follow, figure out what is part of the 'usual' pattern, and watch out for the unusual.

By Thursday morning (day #15), I felt definitively better. I still get tired a bit more easily, but I generally feel well. We'll hope to keep this up until I start all over again next Thursday (April 2nd)!

As always, thanks for your prayers and support,
Robert and Gwyneth

2nd Infusion of Cylce #1 is done

Yesterday, I received my second set of infusions (still part of chemotherapy cycle #1).

Each cycle is 21 days long; the first infusions were on day #1 (last Thursday) and the second set were one week later on day #8 (this Thursday). No treatment happens for the next 13 days until the next cycle begins (after a grand total of 21 days).

So far, I've tolerated the day #8 infusions very well (I received gemcitabine and Taxotere). I've only had some very mild, manageable nausea.

I have been on a steroid, dexamethasone, for three days now. Some patients will have an allergic reaction to Taxotere; the steroids help to prevent this (I had only some mild cheek flushing). Also, steroids are good for preventing nausea. I'm not bouncing off the walls or anything, but thanks to the steroids, I'm certainly not fatigued yet! I come off the steroids today and my blood counts will be down next week, so I'll likley have more fatigue soon.

Thanks again for your continuing prayers and support!
Robert and Gwyneth

No problems with my first infusion

I had my first chemotherapy infusion yesterday and - overall - it was entirely underwhelming.

Gwyneth and I arrived at the chemotherapy infusion area at 9:00. We had a 30 minute orientation session and then were taken back to my nursing area. Recently renovated, the infusion center is actually quite comfortable. There are several nursing areas, each with a half-dozen chairs, recliners, and window seats - you can choose whichever you're most comfortable with. You can eat, read, do work, or watch television (each seat has it's own video setup) and a snack cart comes by twice each day.

I had an IV placed, my vital signs were taken, I received an IV injection of Anzemet (to prevent nausea), and then my gemcitabine chemotherapy infusion was started. The infusion ran over 90 minutes, during which time I did some email, talked with Gwyneth, and ate. At 12:30, when the infusion was complete, my IV was removed and I was free to go. Very little fuss.

I went back to work for a few hours in the afternoon, then we picked up William from daycare and went out for dinner with some of my co-residents. I've had no nausea and only a very little achiness with a mild headache. Today, I feel completely fine (really).

Next week, I'll have my blood counts checked on Wednesday and chemotherapy on Thursday (gemcitabine, like this week, as well as Taxotere). Unlike this week, Gwyneth will go to work during my infusions, but she'll be able to come by and check on me periodically. Oh, the perks of both working and being treated at the same hospital!!

Robert and Gwyneth

Chemotherapy starts on Thursday

After some discussion with the sarcoma groups here at Hopkins and at Dana-Farber, we'll be starting my chemotherapy on Thursday (March 12). I'll be getting two agents: gemcitabine (Gemzar) and docetaxol (Taxotere).

Unlike last time, I'll be able to get these drugs as an outpatient (as both can be given as hour-long, rather than multi-day, infusions). So, I'll spend about half a day on Thursday in our outpatient infusion center while I get my chemotherapy. Next Thursday (week 2), I'll do the same thing. Week 3 is off, and then we start over the following week (i.e., a three week cycle).

Another plus: I won't need a central venous catheter this time (i.e., no Hickman catheter or portacath). Although I will need peripheral IVs for each chemotherapy session, they'll be removed when I leave, I'll have no permanent tube hanging out of me, and I'll generally feel more normal.

Although it's hard to know for sure, we do expect that I'll tolerate the chemotherapy side effects well. Most say that side effects from these agents are milder than those from last year's chemotherapy. Certainly, I will have some fatigue and nausea, but we trust that everything will be manageable. Also, just in time for summer, I'll once again have the fashionable bald look.

As always, thank you for your support and prayers!
Robert and Gwyneth

Lung biopsies

My lung biopsies went very smoothly last week, I was only in the hospital one night, and I'm already feeling quite well. Gwyneth, William, and I were able to drive back to Baltimore last Saturday.

Unfortunately, the lung biopsies did show metastatic cancer. While we're still working out the details, I almost certainly will receive more chemotherapy. Most likely, I'll have infusions every three weeks for about three to five months. I'll also have periodic chest CT scans to monitor what's happening to the tumor nodules during treatment. Or course, depending on what the imaging shows, the plan could change. We expect that all of this can be done in Baltimore.

Obviously, this is very difficult news. We hope to have a plan in place within the next week so that we can get started.

As always, we're very thankful for your support and prayers,

Robert and Gwyneth

My lung biopsy

After a long two days at the hospital, we're home again (in Milton) following my lung biopsy. The procedure was scheduled for 1:30 PM on Wednesday. But, as with most medical scheduling, afternoon appointments tend to be late; I was taken to the operating room around 4:00.

Everything went well with my anesthesia, so I don't remember anything after arriving in the operating room. My thoracic surgeon made three incisions in my right back/chest, inserted various cameras and instruments, and took two wedge biopsies from my right lung (the VATS biopsy procedure). I awoke in the recovery area with several new tubes and wires, including one in my chest (a 'chest tube' that pulls any air/fluid out of the space between my lungs and chest wall), one in my bladder (a foley catheter), two IVs, lots of ECG leads, and a pulse oximeter on my finger. I slept for a few hours and was then taken up to our inpatient room. Gwyneth is often jealous that I get anesthesia during surgery and can sleep through it all - she doesn't have that luxury!

Gwyneth was able to spend the night with me but, as usual in the hospital, we didn't get much sleep. On Thursday morning, I was up, walking, and went for my last radiation treatment. The pleura (i.e., the lining between the lungs and chest wall) is very sensitive, so the half-inch diameter plastic chest tube really hurt as I moved around. After two chest radiographs confirmed that my lung was staying inflated, the surgical intern pulled out the chest tube and instantly became my hero. From this point on, I felt fairly 'normal' and was able to get around comfortably; we left the hospital at 3:00.

My right chest is still quite sore (my surgeon - always wise - noted that I shouldn't be surprised, seeing as he knifed me between the ribs three times). But, I'm getting around quite easily on ibuprofen and oxycodone.

We should have some preliminary information from pathology on Monday; this will help to determine our next steps. Gwyneth, William, and I are packed up and will be driving back to Baltimore on Saturday. We'll hope for good weather and a cooperative 2-year old!

Thanks as always for your continued prayers and support,
Robert and Gwyneth

Biopsy next week

We're happy to report that my radiation treatments are going very smoothly. I've been feeling well and will have my last treatment on Thursday.

Unfortunately, I also have another biopsy procedure scheduled next week. On Wednesday, I had a followup chest CT that showed numerous small nodules as well as some small hazy areas in my lungs. Of course (we're used to this by now), my doctors are not totally sure what to make of these. Cancer is the major concern, but the sarcoma group at Dana Farber does not feel that these look like classic metastatic sarcoma. An infection or an inflammatory condition would be other possibilities.

So, I'll have a lung biopsy procedure on Wednesday here in Boston (a video-assisted thoracoscopy or 'VATS' procedure). We met with the surgeon on Friday, he feels confident that the biopsies will be successful (i.e., we'll get a diagnosis from this), and I should tolerate the procedure well (I'll likely spend one night in the hospital).

We're sorry that this continues to be so complicated, but we do appreciate your continued support and prayers.
Robert and Gwyneth

Ten more treatments to go

Just a brief update:

Finally, the snow is melting! We can actually see grass now (for the first time since we arrived). My treatments have been going smoothly (twenty treatments down - ten to go). The only side effect is some erythema (red skin) in my left groin, but fortunately, it's not painful at all.

We've settled into a good routine for the work week. As for the weekends, we spent our first two on Cape Cod (including a visit from Gwyneth's mom), the third in Boston, and then back to the Cape and Martha's Vineyard for the fourth. Right now, we're in Toronto visiting friends for the long President's Day weekend. We'll fly back to Baltimore next weekend for Gwyneth's pediatrics department party (the "PediProm").

Thanks again for all your prayers and support!
Robert, Gwyneth, and William

One week done

I've now finished five of my radiation treatments (twenty five to go, but we'll not focus on that...). In reality, the treatments are very easy. Pat and I leave home at 6:30, he drops me at a T-stop (on his way to work), I ride the subway in, arrive at the radiation oncology department by 8:00, change into a gown, lie on the treatment table for about 5 minutes, change back, and I'm done by 8:30. A two hour trip for about 20 seconds of actual radiation.

I don't have any side effects from treatment yet (and probably won't have any for at least one week more). The treatment beams are very focused and just cover my left groin, so I'll only have local side effects (such as skin irritation - like a sunburn). I may also have some mild fatigue by the end of my six weeks of treatment.

Typically, I've been staying at the Longwood medical area and working until around 2:00, when I ride the subway back to Milton. Gwyneth and William come with me on Thursdays, when we meet with my radiation oncologist. Otherwise, they have some mommy and me time in the mornings; Gwyneth has some study time when I come home in the afternoon.


Our drive to Boston on Sunday the 11th, was uneventful. William cooperated (despite being packed in the back seat between too much luggage).


He also had his first Happy Meal.


There was snow on the ground when we arrived in Boston; William was a big fan of this.


We were fortunate to be able to use Pat's parent's house on Cape Cod for the long weekend. The beach isn't so pleasant this time of year,


but it was cozy inside with a fire.


We also tried some candlestick bowling (which is even harder than duckpins).

There was even more snow when we arrived back in Milton on Monday, so William enjoyed some more snow shoveling (an infatuation that, I'm certain, will not last into his teenage years).

Thanks again for all your prayers and well wishes.
Robert, Gwyneth, and William

Ready for the radiation

It's now been six weeks since my lymph node dissection. As my surgical drain is still in place, the weeks have certainly not gone by quickly! Thankfully, it will come out tomorrow (as I'm no longer draining fluid from the site). Despite this nuisance, we had a really great Christmas (see video of William on Christmas morning and other photos).

Now that surgery is done, we're all set to start my radiation treatment. While my initial surgery and chemotherapy were both at Hopkins, where I work, they were not in my own department (radiation oncology). So, there was still some separation between my role as a physician and my role as a patient. Now that we're talking about radiation, things are even closer to home; I would be getting treated by the same people and with the same equipment that I work and treat patients with. While this seemed fine at first, we quickly realized that it would not be healthy for me or my coworkers.

We were very happy with the radiation oncologist that I met at Dana-Farber and the sarcoma group there knows me very well. While we're not so excited about spending January in Boston, Dana-Farber seemed the logical place to go for treatment.

Fortunately, we have lots of friends and contacts in Boston, which will make being away form home much easier. Gwyneth, William, and I are all moving to the area for my six week course of treatment and will be staying with Pat and Kristin Helm, who live in Milton, Massachusetts (where 38% of the residents have Irish ancestry!). Pat was a classmate from undergrad and graduate school and Kristin was a medical school classmate. So, Gwyneth and I have been friends with them for some time. Also, they have an 18 month old son, Christopher, which will be great for William (or, at least we know that Pat and Kristin understand how much mayhem a toddler can cause...).

I just flew up to and back from Boston on Tuesday for a radiation planning CT scan; we're scheduled to begin my treatment on Monday, January 12th. Radiation will consist of daily treatments for about six weeks. We'll have the weekends off, so are looking forward to seeing some of New England in the wintertime.

As always, thank you for all of your prayers and support. We really enjoyed all of the Christmas cards.

Robert, Gwyneth, and William