The Good Fight

The good news is that Mark had a visit from a doctor Sunday morning who claimed that he did not have to be in complete darkness as he had been previously advised. He just must stay out of direct sunlight for 6 weeks. That was a huge relief!
The bad news is that Mark keeps running a high temp each afternoon from about 4-6 pm, gets chills and then is hot. These are all symptoms that the pneumonia persists despite the fact he has been on two antibiotics for over two weeks and a new stronger one was added intravenously on Saturday. At the moment, the pneumonia is more cause for concern than the cancer.
I returned home for a night but will be back in Boston for the duration of Mark's hospital stay, however, I am not sure that I will have internet access. At the moment Mark is due to return home Thursday or Friday after the 3 stages of the photodynamic therapy are completed but that will be contingent on the status of the pneumonia. If there are any dramatic changes and I do not have access to the internet, then I will have Gary update the blog.

Well, the kids have been saying we're in the dark for years and now they are right!! Mark had the procedure yesterday in which they inserted the dye for the photodynamic Therapy Treatment. You just wouldn't believe the hunting hat, black knitted gloves and REALLY black glasses they gave him to wear if he goes outside in the daytime!! He also will have to wear long sleeve shirts and a scarf!! It is truly unbelievable and would be so hard to emerge. We are also working on covering a few windows at home in his bedroom and kitchen area so that he will be able to walk around at least half of the downstairs when he returns. This complete avoidance of light will last 6 weeks so I got him plenty of books, a scrabble game and decks of cards along with some reading lights. He is talking about getting outside lights to garden at night!! Gary is suggesting he will turn into a vampire!! What an adventure! He is supposed to start some chemo and possibly radiation as well when he returns home so he may not feel like doing anything anyhow.
He will be in the hospital until the end of next week. His pneumonia is still brewing and his temp is going up to 103 sometimes during the day so that is a real concern. They are going to start a new intravenous IV antibiotic and have been giving him nebulizer treatments too. However, we are less than happy with the staff, lack of attention to the pneumonia and feel that we have to beg for proper attention and treatments. Maybe that is because it is a weekend. The only good result of the insertion of the dye is that it requires him to be in a private room for the duration.
So there is a big sign posted outside of his room stating that it must be kept dark and there is just one dim light on the other side of the room beyond his curtain. He can watch TV and read with a book light.
He is scheduled Monday to have the second part of the photodynamic treatment which is the bronchoscopy inserting light and that procedure will be repeated on Wednesday. His spirits are up and down depending on how sick he feels. I will update you again midweek.

First of all, our business 30th anniversary party exceeded my expectations. It was fantastic to see many business associates from our early years, have the staff gathered together and see close friends and family all enjoying themselves and looking at old photos we had posted around the room. The location at Heritage Museums and Gardens and catering by Casual Gourmet couldn't have been better. We were all sad that Mark was not able to attend but he was there in spirit. I was incredibly proud of my family and staff as I listened to accolades throughout the evening. And when I arrived at Mark's hospital room at 9 pm and gave him the details, he was just as proud and so appreciative of the many people who attended to make it such a successful celebration. He had had a broncoscopy earlier in the afternoon and from 4-7, when he knew the party was taking place, he said he just angrily stared at the clock at the foot of his bed, mad that he couldn't be partying with us. After I told him all about the party, I jumped into his hospital bed with him and we read the book of thoughtful, and sometimes hilarious, sentiments guests had written into a book we had available for guests to send notes to him.
Yesterday's broncoscopy revealed that the tumor had indeed already grown back into his airway since they had blasted it away on June 18. So, this afternoon, they did a rigid broncoscopy and "roto rooted" it away again. He was 100% better and 200% happier after the procedure was done and he could breathe again!!
Starting tomorrow, he is embarking on a new treatment called photodynamic therapy. You can probably get a better explanation on the internet but it is my understanding that tomorrow they will inject a dye. A few days later, they will do some internal light treatment and a few days after that they will repeat the light treatment. People come from around the world to be treated for airway problems by his physician, Dr. Ernst of Deaconess B.I. So, Mark will be in the hospital in Boston for about another week. The "catch" with this treatment is that he can not be in any light for six weeks, direct sunlight or even strong interior lights. They will also be treating his pneumonia with high doses of antibiotic injections. Then it is expected he will return home and start on chemo which they have been delaying for the past month because of his pneumonia. There is also a chance that they will do radiation again. His left side was radiated last Fall and can never be radiated again but the problems currently are in the right lung so that radiation could be employed again.
You would think that Mark would be so fed up with all the treatments but he is so much happier this afternoon since his airway is no longer blocked and he says he is just so "sick of feeling sick" that he is willing to do whatever it takes to feel stronger again after four hospitalizations in a month.
I will update you again in a few days. Meanwhile thanks to all who contributed to making our 30th anniversary celebration so meaningful and enjoyable!!

Mark's symptoms have worsened in the past few days and it was obvious that the pneumonia was causing problems again. He went for a regularly scheduled x-ray Monday, but by the time he got to his regularly scheduled oncologist appointment at 6:15 pm Tuesday, it was clear to him that he was going to end up in the hospital. They think the tumor in the airway has grown back and is impeding the recovery from pneumonia. His breathing was more labored than ever before, he had a temp again and felt generally lousy so between that and the results of the previous day's x-ray, Dr. Aviles sent him directly to the Falmouth Hospital ER. The waiting room was a madhouse but he was put in a cubicle quickly. It was decided early on that he would be sent to Boston, however, it was four hours before they had tests completed, etc. and the ambulance arrived to transport him. Unfortunately for Mark, he was not going to be directly admitted to Deaconess but would have to go through their ER before being admitted...surely another few hours waiting! I slipped him a pain pill before he took off in hopes that he would get some sleep on the way. He was feeling so poorly though that he was more than willing to go and said he didn't want to come home until they were able to rememdy this cycle of the tumor blocking the airway and contributing to pneumonia. He also really needs to start back on some chemo treatments because there are several small tumors in the lung but Dr. Aviles has been putting that off in hopes of remedying the pneumonia first.
It is heartbreaking that Mark won't be able to attend the 30th anniversary for the business being held at Heritage Museums and Gardens Wednesday from 4-7. Afterall, it is a celebration of what we started out of our little rented ranch house in 1977. It was started at a time of desperation when Mark lost his job two months after we relocated to the Cape so he could work for a homecare provider who ended up in jail for fraud. I have been working on a book about our beginnings and the first few chapters will be distributed at the party. It's called OUR FIRSTBORN WAS A BUSINESS.
We intend to keep the celebration upbeat despite Mark's absence and we will have a get well poster for attendees to sign and send messages to him in the hospital. I will go to Boston after the party and will visit him and stay at a hotel next to the hospital until he is able to return home. As sad as I am that he can't attend, I know that he is where he needs to be to feel better. I was distraught before he went to the hospital this evening but actually feel better now that I have accepted he can not attend the party and he is being well taken care of.
I will try to update everyone by the end of the weekend but it is now expected that he will be operated on in the next few days to reopen the airway to the right lung again and that will help remedy the pneumonia. This is his fourth hospitalization since June 15.

Mark's antibiotics seem to be helping and he has been awake and up and about much more in the last few days. So, he is feeling more optimistic and has more stamina to tackle the upcoming tests and treatments. I'll update the blog with results by Friday, July 27.

Mark did make it to the Hospice auction and, as always, we had a good time but it took a lot of effort for him to attend and he was anxious to return to bed the minute we returned home. He has barely left his bed since we got home from the auction Friday night. He still seems to be suffering the effects of pneumonia, slept the entire weekend, was short of breath and generally burnt out.
Today, we went to the oncologist, Dr. Aviles, for a regularly scheduled appointment. It appears that there will be many tests, doctor's visits and procedures in the next few weeks. Dr. Aviles suspected, from listening to Mark's lung, that the tumor is back in the airway and that when he goes to Boston for a broncoscopy next Thursday, July 26th that they will want to go in and remove it again. Meanwhile, Dr. Aviles is getting anxious to get Mark started on chemo treatments again but has held back due to the pneumonia. Mark is going to have an x-ray to see the status of the pneumonia next Monday and will see Dr. Aviles on Tuesday. Our business' 30th anniversary celebration is next Wednesday and the following morning Mark is scheduled for a broncoscopy at Deaconess Beth Israel where we now suspect that they may keep him for further procedures to clear the airway as they did last month. Dr. Aviles is hoping to start Mark on a chemo pill starting Monday, July 30th.
Therefore, Mark is clearly headed into a new phase of diagnostic procedures, treatments, and doctor visits and, after three hospitalizations in the past month, he's understandably discouraged as well as totally exhausted. We are hoping that the antibiotics he is still taking for the pneumonia will eventually relieve him of the symptoms which have zapped his energy but there seems to be lung/tumor/cancer involvement that may be contributing to the pneumonia so the symptoms may persist. It seems to be a little more complicated than his previous problems, less isolated and more difficult to sort out the cause and effect.
I will try to update the blog again by Friday, July 27th at the latest.

I was reading over some notes I made a year ago when Mark was in the diagnostic phase throughout the summer of 2006. Initially, he was told that he probably had lymphoma which was upsetting news, however, there is a very high cure rate. When the diagnostic process was complete in September of 2006, we were DISAPPOINTED to learn that he didn't have lymphoma but stage 4 squamous cell cancer that had metastasized to to his right lung. Then, Gary got diagnosed with non-Hodgkins Lymphoma in April of 2007 and we didn't panic as we may have a year before because we had learned so much about the high cure rate of lymphoma the summer before when we thought that was what Mark had. Then, last week, Mark and I were very depressed with his deteriorating condition because we thought the cancer had spread and the future seemed dismal. When we learned that he had pneumonia earlier this week, we were EUPHORIC because that accounted for all the terrible symptoms that we thought were signs of cancer invading his body! When I ask Gary how he is doing after chemo treatments, I am pleased to hear that he just feels tired. I'm so grateful that he has never gotten nauseus from treatments! If you had told me two years ago that my husband and son would have cancer at the same time, I'd be visiting my son at chemo treatments on the way to visit Mark, in the hospital with pneumonia, I would have thought "No way! I'm checking into the closest mental asylum!" And, yet here I sit, perfectly happy, looking at my computer screen for hours gazing at slideshow pictures of Mike and Steph's wedding! We are all more resilient than we give ourselves credit for when we're actually put to the test! Of course, massive doses of prozac does help!
Mark was in the hospital for two nights and the man I dropped off was a different man than I brought home this afternoon! After 24 hours on antibiotics, steroids, muscle relaxers and nebulizer treatments, he was completely transformed into a healthy guy who just happens to have cancer. After 48 hours in the hospital, he was more than eager to be discharged and although his x-ray wasn't completely clear, the doctors felt that his condition had improved enough to go home.
So, he is home, feeling better than he has been in weeks and planning to attend the Hospice Auction tomorrow night and just take it easy sitting at a table rather than getting into the silent auction frenzy! He will visit the oncologist Monday to talk about future treatments and visit the pulmonary specialist after another x-ray in a few weeks. After three emergency hospitalizations and a wedding in the past month, we are anxious to relax and return to our dull lives of visiting doctors every few days for regularly scheduled appointments and keeping the pharmacy at CVS in business!
I'll write again next week when we find out where we are headed from here!

Mark has felt worse in the past week than he has felt since last Fall. He has been extremely weak, exhausted, coughing, and running a fever off and on. He had his regularly scheduled CT scan Monday the 9th and we contacted the doctor to alert him of Mark's condition. Dr. Aviles called back Monday night at 9 pm and said he had seen the scan and coupled with the symptoms we had described, he believed that Mark had pneumonia. He advised us to go to the ER at Falmouth Hospital this morning and get admitted to the hospital and begin IV antibiotics treatments. Although I thought Mark would refuse after suffering so much and feeling so depressed in the past week, he said he felt so lousy that he would let me take him anywhere! So, we spent five hours in the ER today, he was finally admitted and to a nice private room with much less chaos than the Boston hospitals! Tonight, he was visited by the pulmonary doctor, Dr. Shuttari and the oncologist, Dr. Aviles and both concur that the diagnosis is "gunk" trapped in his lower airway and building up with no ability to escape. It is definitely pneumonia and the plan is to keep him in the hospital for a few days and treat him with antibiotics and a muscle relaxer to reduce the headaches, muscle strains from coughing and pain in his shoulders. He is feeling a little better tonight and is pleased to be in a much more peaceful environment than he was in Boston! We are both extremely relieved to have the diagnosis of pneumonia because we had suspected that the cancer spread quickly and we were very depressed. So this was a much more uplifting diagnosis and we are confident that Mark will start feeling a lot better after he is rid of the pneumonia. He does have to start on some type of chemo regimen soon but we will deal with that after the pneumonia is cured.
Meanwhile, it was Mike's 26th birthday so Mike and Steph, Kristina and Gary, Barbara and Dave and Nick all came over for a roast beef dinner and birthday cake celebration and it was great for me to have a fun filled diversion after the past depressing week. So, although Mark is in the hospital and we missed him tonight, it was an uplifting day for all of us and we are confident that Mark will be feeling better and be able to attend our business' 30th anniversary on Wednesday, July 25th at Heritage Plantation!! Coincidentally, last year Mark missed our favorite occasion of the year, the Hospice Auction, because he had his first procedure to diagnosis the cancer. We were looking forward to his returning with me this year but it is Friday night and that is not looking too promising at this point!
Gary has another chemo treatment tomorrow which means that his chemo regimen will be over pretty soon. He is doing great, getting good lab reports and feeling more energetic after recent treatments than he did in earlier ones. He is reveling in the excitement of opening an additional business retail location in Falmouth down the street from the hospital. It's a stone's throw from Mark's hospital room!
I'll report back on Mark's progress over the weekend.