The Good Fight

From Cape Cod to Boston, Mark is leaving the entire medical establishment baffled! Today, Tuesday, August 29, we left the house at 7 am and returned at 7 pm with yet another new twist.
We thought we were going to see a surgeon about the possibility of amputation of Mark's arm. It turns out that a thorasic surgeon, Dr. Ducko in this case, specilizes in the pulmonary/lung area! He wanted to have another CAT scan to look at that spot on the right lung the doctors had initially seen and then dismissed and surprise number two was that he arranged for it this very afternoon so we didn't have to return another day. Surprise number three was that the initial little mass is now gone and was probably just an infection. The shocker was that there are now more inexplicable little spots on the right lung and some tiny ones on the left lung! Mark's theory is that every time we visit a doctor, we come away with worse news. He had anticipated that we would leave Boston with more information about an arm amputation but now he is back to the possibility of lung cancer and if that is the case, there will be no decision to make about an amputation! If there is cancer anywhere else in his body, other than the area of the original tumor, amputating his arm will not solve anything. Dr. Ducko sounded like the doctors on the Cape when he began uttering, "very unusual, baffling, a unique cancer, I am consulting with many others on this case."
We also got a call last week from the dermatologist we saw at Brighams a few weeks ago and he claimed that two of the biopsies from Mark's face were simply basil cells but the newest one on his cheek was a squamous cell cancer. That doctor is arranging for another surgeon to perform a procedure called Mohs surgery to remove them. In this type of surgery, they go in and scrape the cancer out, make you wait in the waiting room while they perform a biopsy on the spot and keep repeating this procedure until they are confident the cancer cells are gone. Mark is not yet scheduled for that.
Now back to the outcome of our visit with Dr. Ducko today...a week from Thursday, September 7 (three months after this journey of doctor visits began), Mark will go to Dana Farber for a pre-surgery consultation, a PET scan and his first MRI. This MRI is the first look at his brain and if they were baffled when they saw the rest of his body, wait until they take a look at his brain!! Friday morning, September 8, Mark will be admitted to Dana Farber for fairly invasive lung biopsies that will keep him in the hospital for three to five days. The tumor, which gets bigger and more painful by the day, is on the left side and this surgery is on the right side so the after effects are sure to add to his misery. The last PET scan was now a month ago and we must be absolutely current to determine where the cancer is and what our options are. However, at this point, we are beginning to wonder what difference it makes because it will probably be everywhere by the time someone decides to do something about it!!!!
Mark is very confused, extremely depressed and in a lot of pain most of the time. Despite all this, we are planning to celebrate our 30th anniversary this weekend with a few of our friends and some of Gary's college friends who will be on the Cape. Then, on Sunday, we will have a more private celebration with Gary & Kristina and Kevin & Katie. Kevin left for UVM last weekend but is returning with his girlfriend, who is flying in for the weekend, to celebrate with us. Mike and Steph are back in L.A. but will be with us in spirit. September 4 is our 30th anniversary and my parents 58th...we're a family of great endurance!!
We will update you following Mark's exploratory surgery the weekend of September 8th.

The Red Sox' disappointing series with the Yankees epitomized our weekend. We went to the Friday night game which was the longest game in history. Our limo had some problem with the air shocks and by the time we hit Bridgewater, it felt like the bottom of the limo was scraping along the highway and we were driving about 10 MPH. We pulled over at Burger King and the boys tried to help the limo driver fix it. Gary ruined a new shirt laying on the ground. After about a half hour, we got going again but the same thing was happening just as badly as we approached the North End. We were an hour later than we expected and if we had waited in the line to get into Reginas, we would have missed the game. So, we got two pizzas "to go" and stood at the corner eating them as we waited for the limo driver to retrieve us to take us to Fenway.
We were now joined by Kevin's friend so 8 of us piled back into the limo and drove about 100 yards before it became obvious that the problem was hopeless. The driver told us to take a cab to Fenway and he would try to resolve the air shock problem during the game and we were to call his cell. We flagged down a van which would only take six of us. Mark and I got a cab and I got to say that phrase from the movies "Follow that car"! Our cab followed the kids' van to Fenway without incident.
During the game, we contacted the limo driver who said he had recruited his cousin who would take some of us home and the limo driver would take some. He thought the reduced weight would prevent the problem. So, we gave up on the game EVER ending around midnight and the limo and the van met us. Mark, Kevin and I went with the cousin in his van and the others went in the limo.
At this point, I was still in good humor and thought the "ride" to Boston was a funny adventure. However, it has taken me five days to be able to appreciate the humor in our van ride home. But, in retrospect, it would be a hysterical comedy skit. Although he was from Cambridge, the cousin driving didn't know his way around Boston, couldn't see very well and was having Kevin help him find his glasses in the console as he drove erratically, mostly in the wrong direction saying he couldn't see. He came to a complete stop on Storrow Drive twice while deciding which way to go and we ended up north of Boston in Everett before he relinquished the driving and Mark took over, turned around and got us back to Cape Cod with him and Kevin in the back seat!
The limo fiasco seemed to set the tone for the rest of the weekend which included rain Sunday morning when the boys and Mark were scheduled to play golf. In addition, Mark was still reeling from the doctor suggesting that an arm amputation would be a possibility. It was all just too much and the darkness of dealing with cancer has set in. His tumor is growing all the time and continues to be painful and impact his arm mobility. He is now scheduled to meet with a thoracic surgeon next Tuesday, August 29, who apparently will advise us on whether amputation is an option and, if so, what it would entail. I will update the blog after that appointment.
Mike and Steph left Monday to return to CA and Kevin leaves this weekend for UVM. Kevin will return next weekend with his girlfriend, Katie, who is flying in. And, Gary, Kristina, Kevin, Katie and Mark and I will celebrate our 30th anniversary on Labor Day weekend.
Thanks, as always, for your outpouring of support and prayers. Your thoughtfulness and offers of help astounds us and we are genuinely appreciative.

For those of you who have not been involved since the beginning...Mark was told in early June that the lump was probably nothing. Then he was told that it was probably lymphoma, then he was told that it was stage four lung cancer, then the PET scan showed the cancer only in the area of the lump under the arm. Then we were told that it was squamous cell cancer that probably originated from the skin cancer removal in November of 2004 and that it was very treatable because it appeared to be all in one place. Radiation was temporarily arranged to start at Cape Cod Hospital next Monday, August 21 and chemo would start soon thereafter if the doctors in Boston agreed with the diagnosis. We expected to go to Boston and get the "go ahead" today from the specialists but we got thrown yet another curve ball!
First we met with a dermatologist, Dr. Werchniak, at Brigham & Womens who decided on the spot to take off several of Mark's small facial skin cancers. He agreed with the doctors on the Cape that the squamous cell tumor must be the result of the skin cancer removed from Mark's chest in November of 2004. Although it is rare for skin cancer to spread like this, he has seen it before. The only thing that has him baffled is the distance of the tumor, near Mark's armpit from the original site of skin cancer. It's odd that there is no sign of cancer between the tumor and the original site of the skin cancer removal in the center of Mark's chest. The stitches on Mark's face from today's skin cancer removals will be removed on the Cape so there is no plan to see Dr. Werchniak again.
Then we walked up the street to see Dr. Sarah Russell, a surgeon at Dana Farber. We were repeatedly told that she was running late and the 3:30 appointment did not take place until 5:45 but by the time we were done, we wished it had been an even longer wait to hear the news she delivered. We were very impressed with her and thought she was extremely knowledgeable and very detail oriented but it is difficult to sum up what she said. Basically, she needs much more information from tests previously performed that was not provided in the packet we brought. After she reviews more specifics, she will consult with Dana Farber's Thoracic physician to talk about that tiny mass that had previously been detected on the other side, Mark's right lung. If, after reviewing all tests and performing any additional tests that she deems necessary, there is no cancer found elsewhere other than the general area of the tumor under his arm then he will have the following options: Amputation of his arm right up to the shoulder. This is the only option which would probably stop the cancer altogether for good. Or, have chemo and radiation and most likely follow that up with surgery to remove the lump which will probably not disappear with this treatment. The bottom line is that this type of cancer is very aggressive and chemo and radiation only cures about 5% of cancer patients with this type of cancer. It is very likely that a piece of it will break off and travel elsewhere in the body and result in future bouts of cancer sprouting up in the future.
If you know Mark, it probably goes without saying that she hardly had the word "amputation" out of her mouth before he said "Well, you can forget about that"! I'm trying to urge him to keep his options open because every scenario seems to result in limited use of his left arm and he is right handed. It appears that, one way or another, his erratic golf game will be a thing of the past. It will be a few weeks before she gathers all the information about previous testing and consults with a thoracic surgeon so there is a lot of time to ponder and many questions that, we now see, have gone unanswered. I will update the blog when we get any other news. Meanwhile, we are looking forward to Mike and Steph arriving on
Steph's 26th birthday tomorrow. With Kevin's travels and Mike living on the West Coast, it is very rare that we are all together. We are seizing this opportunity to have a photographer come to the house for a family photgraphing session which the staff gave us as a gift at Christmas. Then ten of us are going to New Seabury to celebrate Steph's birthday. Friday, we are going in style to the Red Sox/Yankees game. A limo arrives at 4 to take 8 of us to Regina's Pizza in the North End and then on to the game at 8 pm.
We have received countless, much appreciated cards, well wishes and pledges of prayers. However, Gary's friends from Boston College united to deliver an unsurpassed gift of compassion. The group of male and female "BC Eagles" sent a portable DVD player, "Caddy Shack" and a Netflicks membership along with an absolutely beautiful card and a thoughtful written message that brought tears to my eyes.
Some of these friends are Yankee fans that have been ribbing Mark via e-mail about the Red Sox' dismal record lately. The combination of sincerity and humor has been greatly appreciated. So this is a "Shout Out" of sincere gratitude to Gary's thoughtful college friends, a few of whom were unfortunately born flawed with the "Yankee Gene"!!
I will write again when there is news to share. Meanwhile, thanks again for all your cards, prayers and entertaining e-mails. They have lifted our spirits!

In response to our last entry seeking tickets for the Yankees/Red Sox series
when Mike and Steph are here, we got a call from Steph's father, Tony
Savas, offering us eight tickets for that Friday night!!!! Tony grew up in
NYC and lives in Norwalk, Ct but he sures has a kind and generous heart
despite living in Yankees terrotory! Tony and Steph's mother, Liz, will
join us the day Mike and Steph arrive to celebrate Steph's 26th birthday at
New Seabury. We are all soooo excited!!! Mark has been very uncomfortable
and in a lot of pain with his lump all weekend and rarely got out of bed but
Tony's generosity has sure eased the pain!!!

Mark saw the surgeon who did the biopsy, Dr. Flynn, on Thursday. He is
still so sore in the area they did the biopsy and it's difficult for him to
sleep or be active at all. He is now on antibiotics to kill any infection
that may be in that area and has painkillers for the pain. Dr. Flynn said
that the radiation and chemo should shrink the lump and if there was too
much left after therapy, he would remove it but it is a very invasive, risky
surgery in the armpit area and it would be best to wait until after
chemo/radiation to remove it if necessary.
On Friday, we met with the radiation doctor, Dr. Canaday. He suggests 6
weeks of radiation and Dr. Aviles will be administering chemo during that
same period. Next week, Mark will go to Cape Cod Hospital to do the prep x-
ray, etc. for radiation. However, nothing will be done until we have gone
to Dana Farber for a second opinion.
All the local doctors are still scratching their heads, using the word "odd"
and have never seen a progression of skin cancer develop and spread into the
lymph system like this. They are very forthright in saying they are
baffled. Mark is enjoying being so unique and stumping everyone!!
We got the appointment at Dana Farber for August 16. Mark will meet with
two differnt specialists that day. All his records have been sent to them
so hopefully he will not need to go thru the battery of tests all over
again.
On the family front...Gary and Kristina LOVED Puerto Rico and had a
fantastic, but too brief, vacation there. We are so excited that Mike and
Steph are coming August 17-21 and we are hoping to get 7 tickets to a Red
Sox/Yankees game that weekend. Does anyone know how we could get them?
Kevin returned from Park City and will be home until about August 24 when he
will leave for UVM.
Thanks again for all the prayers, cards, e-mails and website viewings. Your
expressions of caring have been so heartfelt and meaningful and truly are
helping us through this seemingly endless "Diagnostic Period". They are
like ammunition in helping Mark keep up the fight!! We don't explect any
other news until after the visit to Dana Farber so check back August 17.

Today, Tuesday, August 1, 2006, we got the best news that we've heard in
months. I suppose if we had heard this news in May, we would have been
devastated but some dismal recent opinions from doctors has now elevated
this news to the fantastic column! We met with the oncologist, Dr. Aviles,
for results of the PET scan. It appears that the cancer is concentrated in
just one place right around where the initial lump appeared. There is still
a tiny questionable mass in the lung but not enough to consider the lung as
the primary souce of the cancer. In fact, the source of the cancer is still
somewhat of a mystery but the best guess at this point is that it originated
with the squamous cell skin cancer Mark had removed in November of 2004. It
is highly unusual that skin cancer would spread into the lymph system as
this has but at this point, there is no other explanation.
The remedy will be radiation at the cancerous area along with chemo therapy
to target any cells that may have gotten into the system. There is some
possibility that a surgeon will recommend that the initial lump be removed
before proceeding. The area of the lump has been very sore and continued to
grow since the initial biopsy on July 14. So, Mark was given some
antibiotics to address possible infection and pain killers to address the
pain he feels and which often keeps him up at night. Initial predictions of
the oncologist is that there will be a six week regimen on Chemo and
radiation and possibly longer on the chemo. We will meet with the original
surgeon who did the biopsy on Thursday and the radiation specialist on
Friday, August 4.
The oncologist is also arranging for a second opinion at Dana Farber. The
whole thing is so baffling that he didn't know which type of cancer
specialist Mark should go to. So, he had to discuss the whole situation
with the Dana Farber staff and it was recommended that he be directed to a
physician that specializes in skin cancer. They will schedule an
appointment by the end of the week.
Other good news: Gary and Kristina are absolutely loving Puerto Rico and
having a blast on their vacation. They return Friday, August 4. Also,
Kevin has almost completed his drive home from Park City, Utah and we expect
him to walk in the door momentarily. Mike and Steph are planning a visit
sometime in the next month and are greatly relieved by this uplifting news
as we all are.
I will update you after our visits to Dana Farber if nothing significant
evolves before then. They may want to keep Mark as a guinea pig because of
his rare situation!! Leave it to Mark to have everyone baffled with his non-
traditional cancer progression1!
Meanwhile, thanks SO MUCH to you all for your prayers, your support and your
concern. It is amazing how many have visited the website, sent cards and
expressed concern in many ways. It has meant the world to us to know there
are so many rooting for Mark!
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