The Good Fight

The past few weeks have been the most difficult emotionally since Mark first was diagnosed a year ago. He goes to radiation daily, is totally exhausted, has to stay inside out of the sun because of the photodynamic therapy and spiraled into being despondent and pessismistic.
It's been a difficult and sad period for both of us. Counseling with a psychologist had already been arranged for this coming Friday but we still dragged into Dr. Avilies' office today seeking more specifics on a prognosis, honest answers about whether there will come a time he can stop treatment after treatment and have some quality of life and questioning whether it was all worth it.
As always, Dr. Aviles was honest and compassionate and we left his office feeling so much better.
Because the cancer is currently just in the right lung as far as we know, and has not spread to other organs, it is worthwhile to continue treatments. In a month, the tests will reveal the impact of the radiation and we will wait until after that to decide whether to proceed with chemo because he just doesn't think Mark can withstand chemo at the moment in addition to the radiation which is scheduled to end mid-Sept...probably right about the time that Gary's starts up. Also, Dr. Aviles is arranging for Mark to have a PIC line put in and he'll begin intravenous feedings at home immediately. His weight has increased a few pounds but eating is terribly difficult and he has to force himself and at the current stage of the radiation, the eating is becoming more difficult because his throat is getting burnt, etc. Therefore, he will get at least some of his nutritional needs intravenously which relieves me and the inevitable clashes we have over food. It is like living with an anorexic...sometimes, if I walk out of the room, he even sneaks and feeds the dog what's on his plate! Dr. Aviles also started Mark on a new antidepressant which should help with providing some more optimism and boosting his fortitude to continue to fight. So, as always, we were much more optimistic leaving Dr. Aviles than when we arrived. Gary says Dr. Aviles should be our marriage counselor!!
Today was Barbara's 30th birthday so after a long day of appointments Mike and Steph joined us with Barbara at our house and we celebrated her big day with a football ice cream cake and our usual round of laughs interspersed with conversation!
We have had more home cooked meals in the past few weeks than we have had since the kids were small. Thanks so much to our staff who provided a huge carton of absolutely delicious frozen homemade meals along with countless gift certificates and our thoughtful neighbors in our tiny neighborhood who have cooked us about 6 fantastic "soup to nuts" meals in the past few weeks too. They ought to start a Punkhorn Point Restaurant! Now that Mark's appetite has lessened and he has to eat softer foods, the meals will no longer be necessary. Thanks also for the reams of cards and e-mail notes. Mark reads them all although he never responds so don't think your words have gone unappreciated. Our blog is now 13 months old and has had 10,000 hits by people who care how Mark is doing so that in itself is humbling and has really touched us.
We never thought the day would come in which we would be going to radiation and passing Gary and Kristina as they were leaving an appointment with the radiation doctor and then we would meet them later in the same day as they were finishing up with the oncologist as we were arriving for Mark's appointment. But, we have survived a lot as a family in the past year and maintained our sense of humor through it all. Gary's situation is looking really promising. He had a fantastic weekend in MV with Kristina. It was our birthday gift back in June which he finally got to enjoy in the free month between chemo and radiation. Kevin found a nice apartment in Incline Village and started college this week at Sierra Nevada. And, Mike and Steph are looking at houses in the best buyer's market there has ever been! Furthermore, the business is thriving under Gary's leadership so we are taking the staff to see the Edwards Twins show on September 8. I've seen it three times and it is incredible entertainment. Then Friday night, Mark and I are going to a comedy show with our friends, The Terrys, to bring some humor to ending the summer which really wasn't much of a summer for Mark who spent it in the dark on Cape Cod. I'll update the blog again around mid-September when we should have some more news. Thanks for the many ways you have shown support, lifted our spirits, and filled our tummies.

The good news is that my father, Dick McBrine, was only in the hospital a few nights, does not need surgery and was just put on a new medication.
Other good news is that Gary finished his final chemo treatment on Wednesday and now has a month off before he starts radiation.
Mark had one of his most difficult weeks in memory but it was extreme exhaustion and weakness more than anything else. One day, he got up to shave before his daily radiation treatment and he was TOTALLY worn out from that simple activity. He slept about 20 hours a day all week and had a low grade fever all week. He had radiation every day, he still has pneumonia and we change dressings on his burn twice a day. The biggest problem is that the antibiotics which he has now been taking since mid-June have caused him so many stomach problems, he has trouble eating anything and has begun to lose weight. However, we visited Dr. Aviles this afternoon and he has decided the advantages of stopping antibiotics outweigh the benefits that the antibiotics may deliver at this point. So, Mark is stopping those immediately and now has compazine for upset stomachs and Attivan which is a tranquilizer which calms the entire nervous system. These drugs, along with the halting of the antibiotics should address the stomach problems and help him to regain his appetite. Although Mark really needs chemo in addition to the radiation, Dr. Aviles can not forsee starting that with the condition Mark is currently in and the expected burn he will develop from radiation treatments for the next 6-7 weeks. So, he is putting off chemo treatments and will reevaluate in a few weeks following blood tests.
Despite Mark's daily radiation trips to Hyannis and almost constant sleeping when home, we have been able to have a few fun nights with the kids while Kevin is home for his short stay. Kevin leaves this evening to start college next week so we were even able to drag Mark out to New Seabury for dinner Friday so we could all gather for Kevin's final night. All the food and the smells were a little overwhelming for Mark who really couldn't eat but it was fun and comical to be with the kids as always. The Sheehan clan may be interested to know that their cousin, Janice Murphy, who has a house in Osterville, was at New Seabury Friday night too, recognized Mark after not seeing him for about 15 years and came over to talk. It was nice to be able to introduce her to the boys, Steph and Kristina but she was devastated with our sad news.
Unless there are any dramatic changes, I will wait to update the blog until after Mark's appointment with Dr. Aviles on August 27th. He will probably be sleeping a lot with the daily radiation treatments but hopefully, he will be able to regain his appetite and not be quite as sensitive to sun by then. The photodynamics therapy effects were supposed to gradually diminish over a six week period.
Our sincere gratitude goes to our many neighbors who have been offering to cook meals to help us out. I rarely cooked anyhow, so it will be nice to have some home cooked meals! Also much appreciation for our incredible sons who have kept us laughing through it all and especially to Dr. Aviles, Mark's oncologist, who we adore because he is so compassionate, explains things so well to us, gives us the most logical and sensible advice of all the doctors we've seen and is able to bring calm to us and rejeuvenate both of us every time we visit. And, best of all, he is curing Gary of cancer!
As always, if you want to communicate, the best way is to e-mail me at sheehan@cape.com. I print out all messages which are specifically earmarked for Mark. And, if you want to be added to the list of those who are notified every time I publish a new post, send me an e-mail requesting to be added to the list.

Once we got over the bridge returning home, our Cape oncologist, Dr. Aviles, called and told us that Mark could be seen at Cape Cod Hospital radiation dept. if we could make it there in an hour. We stopped at the Mashpee CVS to pick up a new script the Boston doctor's had prescribed but found it cost $1,200 for 14 pills and required a prior approval and only the pharmacy in Falmouth had some. By the end of the day, the pulmonary and oncology doctors on the Cape decided it was completely unnecessary and that Mark should just remain on the antibiotics he had been taking.
We made it to Cape Cod Hospital by 1:30 and immediately saw the radiation doctor who heads the dept. and is covering for our regular radiation doctor. He spent more than a half hour TALKING to us, going over scan results on the computer, etc. He marked Mark's right chest to begin radiation Monday, August 6. There will be a very rigorous 6-7 week regimen of daily treatments that will probably burn the skin as badly as the radiation did last fall. And, in addition, Mark will probably experience problems swallowing and with swelling in his neck, etc.
and have to resort to a liquid diet after a while. Fortunately, milk shakes are one of my few specialties!
It will be a tough period but Mark is definitely up for the fight, elated to be home, and so grateful for the wonderful care and attention he receives on the Cape. We spent more time on the phone and in person with Cape doctors THIS AFTERNOON than he did with all the doctors combined for the 10 days he was in Beth Israel Deaconess! So, he appreciated them more than ever and thanked them profusely while complaining about the care in Boston. He will also probably start some chemo treatments in a few weeks after his pneumonia is more under control. The scans show a pooling of fluid laying on the bottom segment of his lung (which is the pneumonia) and this may also be masking more tumors at the lower part of the lung but the main concern at the moment is keeping the airway open. The tumor is beginning to grow back already and should be squelched by the radiation which is what the immediacy is all about. This radiation is on the opposite side of Mark's body than the radiation he received last year. The radiation will cover most of the right area over to mid-chest where they radiated on the left side last year. After this round of radiation, neither side of his chest will ever be able to be radiated again. There is no cancer in his liver or any other body parts at this time and so we are hoping that the radiation is as effective on the right side as it was on the left side last year and buy him some more good times like we had last winter, this spring and at Mike and Steph's wedding.
Scooter welcomed us home and Mark was totally exhausted from the day's saga so he crawled right into bed and fell asleep with Scooter at his side!
Unless something unforseen happens, I won't update again until mid-week around August 8th to report on the status of radiation, etc. Meanwhile, thanks as always for all the well wishes and pats on the back for our endurance dealing with our week of medical mishaps! The week seemed to strengthen our resolve to fight but to keep the battle on Cape Cod!

Wednesday was the most upsetting and hopeless day yet. The doctor arrived early and although Mark thought the final procedure was supposed to take place that morning, without explanation, the doctor said it was Thursday. Mark continued to run a high fever. The supervisor of nurses spent hours listening to and attending to our concerns and was prompt in investigating where the breakdowns in communication had occurred and that was satisfying. Much of the problem stemmed back to one particular nurse and poor communication from the world reknown doctor and his team. But, at nighfall Mark was just totally burnt out and weaker than ever. We were scared that the antibiotics still weren't addressing the pneumonia symptoms and therefore he would not be eligible for treatments that were vital to ridding him of tumors. We had a sad, pessimistic night.
He finally had the final step in the photodynamic therapy Thursday morning. The doctor called me when it was completed and delivered the shocking news that the tumor blocking the airway had grown back again in LESS THAN A WEEK and was COMPLETELY blocking the airway again! Gary and Mike drove up and we all had a meeting with the doctor at 5 pm Thursday. He drew pictures on the blackboard, explained exactly what the problems were and addressed all our questions. The kicker was that what had transpired with the regrowth of the tumor had negated the benefits of the photodynamic therapy HOWEVER because it had been injected into his system, he still had to stay out of direct sunlight for 6 weeks!!!
The new course of action is to get radiation ASAP and chemo when he is cured of the pneumonia which should now able to escape since his turmor and airway have been cleared again. He didn't even spike a temp. today. However, with the quick growth of the tumor, he must get radiation IMMEDIATELY. So, we are headed home and are hoping to start radiation either Friday or Monday. He has also been prescribed a new antibiotic in pill form which should better address the pneumonia.
Mark felt so much better after the airway was cleared again and has a renewed respect for the many oxygen patients he has treated over the years because it is so scary to not be able to breathe. So, although he swore he would never, ever endure radiation again, he is willing to undergo another rigorous round in hopes that it will clear his right airway and lung as well as it did his left armpit last year. Now, he swears he will never, ever return to the hospitals in Boston for treatment again no matter what the doctors recommend after the horrendous week of calamity we endured.
We are looking forward to Kevin's return for a visit next week and I will update the blog with the treatment plan at the beginning of the week. We will be back on an erratic schedule, sleeping late, erratic naps for Mark and running around to doctors on the Cape so it would be appreciated if communication was limited to e-mails and any messages you want Mark to receive will be printed out for him if you write to me at sheehan@cape.com I have a list of people that I e-mail whenever I update the blog and if you would like to be added to the list, please send me your e-mail address.
We are elated to be returning home and keeping Scooter company!
Nancy

The care that Mark has received at Deaconess in the week he has been here has been so deplorable that I feel like contacting Michael Moore and asking him to add another scene to his film SICKO. Today it all came to a head when Mark ran his daily 102-103 temp which started earlier in the afternoon than it had been starting and we could not get a nurse to come to the room for 40 minutes and she only arrived after I went to the front desk to complain. Then she lied and told us that she had contacted Falmouth Hospital for test results that we had requested at noon, when, in fact, she had completely ignored the request. Last night, his BP was down to 70/45. And, all of this was after several incidents in the past week in which doctors have written scripts and requests which have not been followed, medications which never arrived on schedule unless we begged for them, etc. You would just be APPALLED at what has transpired...or what hasn't!! We are even considering an ambulance ride back to Falmouth Hospital to be treated by Dr. Shuttari, his pulmonary doctor, after they finish the final photodynamic therapy treatment tomorrow so that he can get a better quality of care.
It takes a lot to push Mark over the edge, but he finally"lost it" and we began requesting supervisors, etc. who were attentive and openly admitted that they had screwed up numerous times. I could go on and on with incidents but will leave it at that. In any event, Mark has been running a high temp every day and still has pneumonia symptoms despite the new IV antibiotics which were finally added two days after they were supposed to be started. He has now been on them for 36 hours and his symptoms are worse than ever and temp going higher than ever. He gets weaker by the day and the HUGE concern he has is that the oncologist can not start chemo until he has gone 3 days without a temp and meanwhile, the tumors are growing and spreading.
Wednesday is the final photodynamic therapy treatment and they will "wash" the airway and see if they can get a better idea of what is going on and what is causing the problems. Of course, after we began to complain to the "higher ups" they began to order all sorts of tests, x-rays, cultures, etc. that should have been done a week ago and doctors and nurses were at our beck and call. Basically, they have been all pumped up about doing this fairly new photodynamic therapy and using him as a guinea pig and have had no interest at all in his pneumonia which is why he was sent to Boston to begin with!
So, we just don't know what tomorrow will bring, we still don't know what time the final surgery is scheduled and we don't know whether we are coming or going. I'll fill you all in when we "get a grip"!!