23 November 2013 | Vero Beach, Florida
18 November 2013 | Eau Gallie, Florida
17 November 2013 | Eau Gallie, Florida
13 November 2013 | New Smyrna Beach, Florida
11 November 2013 | St Augustine, Florida
09 November 2013 | Sisters Island, Jacksonville, Florida
07 November 2013 | Fernandina Beach, Florida
05 November 2013 | Beaufort, South Carolina
03 November 2013 | Charleston, South Carolina
30 October 2013 | Georgetown, South Carolina
29 October 2013 | Prince Creek, Waccamaw River, South Carolina
27 October 2013 | Southport, North Carolina
25 October 2013 | Carolina Beach, North Carolina
24 October 2013 | Mile Hammock Bay, North Carolina
23 October 2013 | Taylor Creek, Beaufort, North Carolina
20 October 2013 | Broad Creek, Neuse River, North Carolina
18 October 2013 | Silver Lake, Orcacoke, North Carolina
16 October 2013 | Manteo, North Carolina
13 October 2013 | Elizabeth City, North Carolina
11 October 2013 | Dismal Swamp Visitor Center, North Carolina
Goodbye to Moonraker
19 May 2016 | Port Annapolis Marina, Annapolis, MD
Well it’s been a bit stressful, and a lot emotional, but this morning I signed the papers to sell Moonraker. I’m still waiting to see that big check hit my bank account, but I’m pretty certain at this point it will. All told it’s been 77 days from the time I listed the boat until the final papers were signed. Really, the deal went through three weeks ago but it’s taken until today to complete everything.
I was very motivated to sell the boat. Last blog I mentioned that I put the listing up on some sailing related Facebook pages. That led to an instant message relationship with a guy in Vermont who was in love with Bayfield 40’s. He had come to Maryland to see the other Bayfield 40 that was for sale, and the one that forced me to put mine on the market for a much lower amount than I had hoped for. He told me what bad shape that one was in and it just made me madder that we listed my boat for so little. Oh well, that one had been on the market for a couple of years and it just took me 2 months to sell mine – that counts for something (or I will keep trying to tell myself that!). He was super interested in Moonraker and was going to come down and see it the weekend of the Annapolis Spring Boat Show, along with a couple of other boats. In a first of a number of small world stories – he is using a professional boat broker to help him find the best boat. He told me the name of his broker – John Neal. Whoa! Bill had a habit of picking up famous cruising sailors and forming relationships with them – offering our house for them to stay at when in Annapolis, or just a nice homemade dinner if they didn’t need a place to stay. We met John Neal, and his then wife, Barbara Marrett, when we took a cruising class, even before we moved to Annapolis. We kept up a relationship with them and they accepted Bill’s invitation to stay in our apartment when we moved to Annapolis. Of course when the guy told John that, John didn’t remember. It was 24 years ago... Anyhow, the trip got cancelled because the brokers were all busy with the boat show and the guy never came to Maryland.
Another famous cruising sailor Bill had picked up along the way has become a very close friend, Pam Wall. She also was coming to Annapolis for the Spring Boat show. She was teaching some classes in what they now call Cruisers University. I picked her up at the airport, told her about how I was frustrated by not hearing anything about what was happening with the boat, and we decided to have me make up a flyer about the boat and print it so she could have it in case anyone in her classes were looking to buy a boat. This was our targeted audience – it would be a shame to not tap into it. Previously this was something only Bill would do – I am not very artistic or creative – but I sat down and, if I do say so myself, made a great flyer. I took it to get printed and the guy at the copying place screwed up and printed them in color. Luckily – after I already had paid for them in black and white. I took them to Pam and that weekend I took two different people from her classes to see the boat. The first one was impressed but I could tell not really interested. The second one was a couple and they loved the boat, but they didn’t even know what a ketch was. I wasn’t sure they would be interested.
The next week was Election Day in Maryland and I did work as an election judge all day. We were not allowed to have any electronics so my phone was turned off all day. In the second of my small world stories – my job at the polls was to check people in by looking them up on a notebook computer. Luckily I didn’t get my own precinct (I didn’t really want to spend the day talking about Bill to all the people who knew him). There were only 4 out of 500 people who came through that day that I knew. Three of them didn’t know me – two were people who knew Bill – one was an ex-close friend of ours who either didn’t want to deal with me or didn’t recognize me without Bill next to me!! It wasn’t a very busy day so at one point I decided to look Bill up and see if the Board of Elections knew he had passed away. His status was “Not Qualified” – so I guess that is good. I showed the woman next to me, who I had never met before, and she looked at it and said – “Oh!!! I worked with him at Health and Human Services (Bill’s last job) We used to take the commuter bus together.” What are the odds of that??
Well, at the end of that very long day I finally turned my phone on and had a voice mail from my broker. He said we got an offer on the boat but it wasn’t what we were hoping for. He told me to go look at the email he had sent me with the offer. I rushed home and looked at it and I was furious. It was an insult – and I was very mad at the broker for even thinking I would accept it. I spent all night being angry – so mad that I couldn’t sleep at all. Luckily when the broker called the next morning – probably in response to the, I’m sure, not very nice email I wrote him at 10pm – he told me of course we weren’t going to accept that. He said he felt sure we would get another offer within the week.
And he was right! The next offer – 4 days later – was a lot closer to the asking price. We negotiated a bit and came up with a number I could live with. Still I didn’t know anything about the buyer. I thought I would be a part of the sea trials but apparently that is not how it is done. I thought then that I would meet the buyer at settlement – well apparently that is not how it is done either. I went to my broker and signed all the papers this morning and they took them to his broker and finished the deal.
I couldn’t stand the not knowing part. I knew if Bill were involved with this he would have found a way to meet the new owner. So I took the matter into my own hands and I called his broker. My broker didn’t have much information. Luckily his broker was a very nice guy and he told me my third small world story which makes me feel a whole lot better about everything.
When we were getting ready to leave for our second year of cruising, in the fall of 2013, Bill was replacing the tri-color light at the top of the main mast. Well that didn’t go very well, and to make a long story short, we had to have the mast removed so we could get the new wiring installed. We thought it would be cheaper to do it at a little marina our friends use all the time off of the Rhode River, where we would be anyhow for the Seven Seas Sailing Association Gam. Turns out we were wrong about it being cheaper… but it took a couple of days for the whole thing to get resolved and we anchored out in the creek next to the marina. Apparently that is where the buyer first saw our boat, he was living aboard in the marina. Moonraker is pretty impressive to see. When his broker took him to see it last month he remembered where he had seen the boat before. Actually, I am now in email contact with him and we have discovered that he also came by on a motorboat this past summer while we were in our community marina and asked about the boat.
I’m sure I will probably learn more things as I communicate with him more but his broker told me that the boat will definitely be cruising during the winters and in the Chesapeake at that same marina off the Rhode River in the summers. I understand he is going to rename the boat Bucket List. So – to my cruising friends – if you see the ex-Moonraker – masquerading as Bucket List – somewhere along the way – make sure you say hello and tell the old girl I am thinking about her!
Boat for Sail
06 April 2016 | Port Annapolis Marina, Annapolis, MD
It is now almost two months since we lost Bill and I miss him every day. Most of the time I am OK but then I remember why I am doing something alone and I get very teary eyed. It’s amazing how busy I have been, I’m certainly not bored yet.
The memorial service we had for Bill was exactly what I wanted and I’m sure he would have wanted too, even though we never did get a chance to discuss it. There were about 150 people there. There were people from all through our life and I am very grateful to everyone that made the effort to come, especially those from so far away. I had “family” and extended family to the house afterwards and I was surprised that that was 51 people! It was good closure for me and the whole experience was not a bad one.
So now I am working on getting rid of the things that were part of my life with Bill but won’t be a part of my life without Bill. I’ve gotten reacquainted with EBay and Craig’s List. I hadn’t touched either of those services since I was working on getting rid of the things in the house we didn’t want any more when we moved on the boat. So far I’ve been pretty successful. I try to get rid of a couple of things each week, starting with the higher ticket items. One of the things that surprised me is that I assumed I would continue getting Bill’s Social Security checks. Turns out that I can’t get them until I turn 60 – which is this year – but not for quite a few more months. Oh well – that just makes the EBay and Craig’s List sales that much more important.
Of course the highest ticket item I have to sell is the boat. People said don’t change anything for the first year – maybe you will want to keep something you have decided to sell. Well, I know for sure, I will not want to keep the boat. Bill wanted me to, but he knew I wouldn’t. I couldn’t even begin to take care of it, or use it by myself. So I have found a broker, the same one we bought the boat from eleven years ago, and have listed the boat for sale. See the picture above. Here is the sales information Boat For Sale
. Share it with all your sailing friends!! I have posted it on some sailing related Facebook pages that I have access to. I’ve talked to some people who are interested in it, but can’t afford it. Hopefully the right person will find it and fall in love with it. It actually makes me sick to my stomach when I think about the price I have to sell it for. Unfortunately we put lots more money into the boat than we would ever hope to get out of it. Bill had warned me of that. But I do want someone to buy it quickly before it starts costing me a lot more money. It’s a great blue water boat and it’s a great home for someone who wants to go cruising. It’s all ready to step onto and sail away!
In between selling things I’ve been keeping busy. My son and daughter-in-law took me to the Washington Nationals Spring Training camp with them in Florida and we watched some baseball. I’ve had some family and friends here to visit and staying with me, and I’ve spent some time with people that I know really cared about Bill and are now worrying about me. I’m doing OK though. Someone suggested that maybe I might want to be an election judge in Maryland’s upcoming primary election so I did fill out an application for that. They called me the next day and this morning I had my training! It’s going to be a long day – 5:45am until 9:00pm (unless they extend the hours for some reason). We’ll see how that goes and whether I’m willing to try it again in November. So far I’m glad I am doing it.
Generally things are going well. I’ll be happy when the boat sells, that is for sure. They do say the two happiest days of a sailboat owner’s life are the day you buy the boat and the day you sell it!
13 February 2016 | Port Annapolis Marina, Annapolis, MD
I was always sorry my exciting cruising blog had become a cancer blog but I am even more sorry now to have to report that my captain, friend and lover passed away yesterday afternoon. Bill told me he never wanted to think of his picture being the blog picture along with a death announcement. He certainly didn’t want to die but the past few months of his life were no way to live.
Ever since we came home from the long hospital stay after Bill’s brain surgery he had no energy to do anything. We blamed it on the many drugs he was taking, or the fact that he hadn’t been moving around at all, but the fact of the matter is that the cancer was growing too fast in his lungs and restricting his breathing and zapping his energy. Bill basically lived on the living room sofa from the beginning of November. It didn’t make either of us very happy.
The last few months we’ve been trying different procedures to help Bill’s breathing. As I wrote in the last blog update we were going to Hopkins for bronchoscopys and were about to try getting the fluid drained from Bill’s lungs. In the last two weeks Bill had three thoracentesis procedures, the official name of the draining of the fluid – at the hospital they just call it a tap. On Wednesday we were on our way to the third scheduled procedure in the hospital in Annapolis when we had to go back in the house after struggling to get Bill to the car. He was having a horrible time breathing and was incredibly weak. He couldn’t make it up the front step and tumbled to the ground. I couldn’t get him up, a friend drove by and helped too but Bill was having so much trouble breathing that we couldn’t do it. He told me to call for an ambulance. I was dreading another ER visit – it would be our fifth in five months – but I called. They came and took him to the hospital with lights and sirens. The significance of that was not lost to Bill, a former police officer. Not breathing is serious.
I was worried they wouldn’t take the fluid out of his lungs because they were more focused on making him breathe. They came and did it right in the ER room though. This time, because of the lack of space, they placed the collection bottle in Bill’s lap so he could watch the bottle fill up. He was very interested. After that was finished, and we had been through all the other indignities the Emergency Room has to offer, the doctor told us we could go home or stay in the hospital. I said Great! Draw up the discharge papers. After the doctor left Bill said he thought he was too weak to go home – so we stayed.
It was a good thing to do though – as always Bill knew what he was talking about. Unfortunately they didn’t have a room right away and we ended up sleeping (or not sleeping!!) in the ER. We didn’t get up to the oncology floor until about 4pm on Thursday. They were very good to Bill and addressed some issues that no one else was addressing. I wasn’t sure how long we were staying but I was prepared this time – I had gone home for a short time on Thursday and picked up some things. Unfortunately early Friday morning Bill woke up very very agitated and complaining about significant chest pain. I called for the nurse and the drama soon started. Every department showed up to check to see if Bill was having a heart attack. It was like on TV – but a lot slower. They concluded it was a respiratory issue. We managed to go back to sleep but a few hours later Bill woke up again even more agitated and very disoriented. I decided I better call for the nurse again. They sedated him somewhat, but he still wasn’t doing too well. I ended up sitting next to Bill and holding him in the bed. That is when a doctor I know and respect came in. The evening before a doctor I didn’t know, and certainly don’t respect, had visited us and told us that if Bill had any type of distress that needed intervention they wouldn’t bother because he wasn’t going to make it anyhow. The “good” doctor on Friday morning basically told me that the cancer was too advanced and Bill only had days, not weeks, and that we should change the focus of what we were doing to make him more comfortable. As it turns out he only had hours. Our three kids came and we all said goodbye, even though Bill wasn’t very conscious. At one point I told him that everyone who knew him loved him and that is when he raised his eyebrows – the only response I had seen from him. I wasn’t sure whether that meant he didn’t believe me – or whether he was acknowledging that it was true.
So now we are dealing with the details of wrapping up a person’s life. We will be having a memorial service in Annapolis on Saturday, February 27th. Here are the details : Your text to link...
21 January 2016 | Port Annapolis Marina, Annapolis, MD
Unfortunately the picture above is from our first year cruising to the Bahamas in 2013. The best I can do for interesting photos right now is to wait until this weekend for the massive snowstorm they are predicting for those of us unlucky enough to not be in the islands. There aren’t many chances to get a blog worthy picture when all you do is sit at home or go to doctors’ appointments and hospitals! That is where we are at now.
Since our last blog a lot has changed on the health front, and not for the better. Bill has been very weak and his breathing has become an issue. He has started on the new treatment and has had two infusions so far but we are seeing signs to indicate it doesn’t seem to be working. He has even had to have two blood transfusions because his blood tests showed very low hemoglobin counts. None of this is good news but some days he is unable to walk from the sofa, where he has taken 24x7 residency, to the bathroom without having to spend 15 minutes trying to breathe again afterwards. That and the coughing has gotten worse, if that was even possible.
So we asked our oncologist again, what can we do about this coughing thing? When pushed it turns out that they usually have something they can try that they just never thought of before. He sent us to see an Interventional Pulmonologist at Hopkins. The tool they have in their arsenal is the bronchoscopy – there is a rigid bronchoscopy and a flexible bronchoscopy. A bronchoscopy is a procedure that allows your doctor to look at your airway through a thin viewing instrument called a bronchoscope. The rigid procedure requires an operating room although there is no actual surgery, the flexible one apparently doesn’t have that requirement but they are both done with general anesthesia. We are experts now – Bill has had three since right before Christmas.
Apparently the cancer in his right lung was causing his airway to get blocked. The first procedure showed the airway was 60% blocked so they “debulked” the tumor (cut it out of his airway) and installed a stent (a small plastic tube designed to hold the airway open). Then they sent Bill to the recovery room and left him in the capable nurses’ hands. Unfortunately it didn’t go too well. Bill coughed violently for over 2 hours. I’m sure everyone there trying to recover was feeling the same way I feel all the time “please make this coughing stop!!”. Finally I had to beg them to call the doctor and give him some kind of drug to make him stop coughing. I don’t know why they didn’t think of it on their own! It worked great! A little codeine, a little strong cough syrup, everyone’s night was instantly better. Then they sent us home and the next day was Christmas Eve. We had planned on having our entire family over for an early dinner, so even though Bill wasn’t really recovered we did it anyhow. It was a rough afternoon. He coughed, and continued to cough through the holiday weekend. By early Monday morning the cough became the inability to catch his breath at all. We finally called the pulmonologist at Hopkins and he said come to the ER at Hopkins, right away. Turns out that the stent they installed six days earlier in his right lung was now in his left lung! That is when they did a quick flexible bronchoscopy and took out the stent! I am sure that probably happened during the violent coughing that first night before we even left the hospital. They wanted to admit us but after 18 hours in the ER bed they still didn’t have a room available so at 4am I told them we wanted to go home. So that is when they discharged us! This was followed by two glorious days of no coughing at all. We don’t continue to be that lucky.
Two weeks later we found Bill getting another rigid bronchoscopy, since his breathing was getting difficult again. This time his airway was 100% blocked. They debulked again and sent him back to the recovery room. Again I had to beg for drugs so he could stop coughing and go home. This time it was Bill that said he wasn’t staying there another minute. They gave him codeine and cough syrup again and let us go home. On the hour trip home Bill said if he had to keep having this procedure then maybe we need to have it in Annapolis so our hour ride would become 5-10 minutes instead. So yesterday we met with a thoracic surgeon in Annapolis that was very nice and helpful but told us he sent cases like Bill’s to Hopkins. He offered a few other things that might help us though. He thinks if Bill gets the fluid that the CT scan shows on his lungs drained it might help and he suggested we see the radiation oncologists in Annapolis. Plus he suggested we meet with palliative care specialists. We met with the radiation oncologist today, who was very nice, but she basically said radiation wouldn’t help Bill’s lungs, and really he should stay with Hopkins if he wants to explore it any further. The palliative care nurse is coming in two weeks so we’ll see how that goes. We are waiting to hear when we can get Bill’s lungs drained.
Our Hopkins oncologist is on vacation now and we have actually let him not have to deal with Bill for over a week now, although he did tell us to email him if we had any concerns. He will be back next week and he will have a long email, and a new CT report waiting for him. There are lots of things we need to discuss. We never made it to the appointment at University of Pennsylvania last month since Bill was too weak to go, but we are making an appointment at Georgetown to see what other options we can explore.
For now we are going to hope that Bill’s breathing stays stable while we wait for the snowstorm to pass and melt away.
On the Hard In More Ways Than One
09 December 2015 | Port Annapolis Marina, Annapolis, MD
Because of Bill’s health issues we decided that the smartest thing to do was to haul Moonraker out of the water for the winter. The Friday after Thanksgiving, along with our son and our grandson, we motored the boat over to Port Annapolis Marina. We were so lucky that the temperature was reasonably warm and there wasn’t much wind. Unfortunately we never did get a chance to take the boat for another sail or a night out at anchor, as we had hoped for. It was a nice ride up the bay. There was only one other small boat at the haul out dock but for some reason they put it right in the middle of the long dock so docking was not as easy as it could have been. With the help of our son and our grandson we were able to get the headsails off and all the cushions home. We spent Saturday, with both of our sons, removing the rest of the sails and bringing the dinghy engine and dinghy home for the winter. None of those things are easy to begin with but Bill was really not able to help at all, only with advice and direction. Our sons couldn’t believe that we generally do those things alone. Yep…no one ever said owning a sailboat is easy. Bill did manage to get the oil changed for the winter and we got one of the guys who work in the boat yard to help us fill the diesel fuel tank from our jerry cans. We got the engine and the water system winterized while the boat was still in the water. We still have a few more winterizing tasks to complete.
The haul out went OK. They pulled us out of the water pretty early in the morning but it took them some time to move us up to the yard. We weren’t sure where we were going to end up but are pretty happy with our spot. We are up on a hill and I do believe we can actually see Back Creek from the deck. We don’t expect to spend any time working on it though. Hopefully life will be back to normal next spring and we can just have the bottom painted and be put back in the water and get sailing again.
For now life is anything but normal. Bill hasn’t really felt well at all since he got home from the hospital. He has been weak and tired and the coughing has gotten much worse. Our family doctor actually sent him to the emergency room the day before Thanksgiving to see why he was so worn out. There were no conclusive results, just mostly six wasted hours of our life. Not that we are doing much but hanging out at home right now. We have had some friends and family visiting and that is always nice.
This week Bill had the cyber knife radiation treatment on his brain that is the standard follow-up to his brain surgery. They also got him set up to have five radiation treatments on the tumors on his leg. On the way home our oncologist called and said that he thought it was time to find the next treatment option because there isn’t a lot of chance the current one is working. We were hoping to have Bill get in to a really promising clinical study at the National Institute of Health but the doctor told us that wasn’t really going to be an option for us now. Instead he is going to try a new method they have come up with of using the two kinds of immunotherapy Bill has already tried but giving them together at the same time. That along with the radiation treatments he will be getting on his leg might actually make the immunotherapy work even better. We are starting that next week. We are also going to consult with the top melanoma doctor at University of Pennsylvania to see if she has any other ideas on what we can do.
We are hoping for more energy and less coughing and good things to happen with the new treatment plan to get us through the rest of this year so we can start 2016 a lot healthier.
Successful Surgery and a Lonely Boat
05 November 2015 | Annapolis, Maryland
Bill’s brain surgery went very well. Unfortunately though, our 2-3 days in the hospital turned into 9 days. We are going to blame that on Advil. Besides the two days previous to the surgery that Bill couldn’t take this wonder drug, he also could not take it for a full week after surgery. Apparently there is not a lot of pain associated with cutting open your head and stapling it shut. The problem continues to be the tumors on Bill’s leg that are still increasing in size and causing a lot of pressure and pain whenever he moves. This caused a lot of trouble doing the kind of things that hospitals have to make sure you can do before they let you go home; like going to the bathroom. I won’t go into lurid details but Bill ended up in the inpatient rehabilitation center until they would let him take Ibuprofen again. They let him start taking it last Thursday night – a week after surgery – and he was finally well enough to go home on Saturday.
I was able to spend every minute at Johns Hopkins hospital with Bill. He moved within the hospital three times. First he was in the Neurological Critical Care Unit – which was an excellent experience. Then he moved onto the neurological unit and finally inpatient rehab. Every person we came in contact with, and there were a lot, was helpful and competent. The real problem was they didn’t leave us alone for a minute. The doctors would show up at 5:30am, sometimes earlier. Good thing we have experience waking up fast from our time at sea! From that point on other groups, some we didn’t even imagine existed came to talk to us. This is the first time in the 41 years Bill and I have been together that he has been admitted to a hospital. It wasn’t something we want to do again, but we were really impressed by the hospital and the staff. Even the art around the hospital is great!
Besides the pain in Bill’s leg, the only other issue is the weakness that remains in his left hand. He has started going to Occupational Therapy and Physical Therapy here at the hospital in Annapolis. He has made significant progress though, just as the doctor said he would. Bill has started taking the oral chemotherapy he used a couple of times before again and that seems to be helping a lot with the tumors on his leg. Finally today Bill got the many staples they put in his head out. He is still pretty exhausted but the neurosurgeon told us today that the type of anesthesia they use for brain surgery takes 4-6 weeks to leave his body. We still have a couple of weeks to go. Next comes some radiation therapy but we don’t have that scheduled yet.
Because Bill was actually feeling OK for the first time this morning we went to check out Moonraker and see how the boat was doing. She looked great – but very lonely. Moonraker was pretty weak too. The batteries were really low. We have been going back and forth on whether we want to take the boat out of the water for the winter or not. We still aren’t sure but we do have a spot reserved, just in case. We are hoping to go out on the boat for a couple of days if we can find a time when we don’t have a doctor’s appointment or a visitor scheduled. The enclosure, shown in the picture above, we had built this year finally is complete so we don’t have to worry about being too cold.
22 October 2015 | Annapolis, Maryland
By now you have figured out that nothing stays stable or easy for us. We were feeling pretty good about the boat. Moonraker is looking really good and we even got her away from the dock three times and at anchor for two nights this month. First we went out on our own for an afternoon for a little shake down cruise where we discovered our starter battery was dead, among other less crucial issues. Then we spent the following weekend where we took four teenagers with us overnight back and forth to the Rhode River. First our two grandsons that live in Rockville and then our two nieces that live in Philadelphia. We all had a great weekend, and except for forgetting a very crucial can opener and an unfortunate broken part on the dinghy engine all went wonderfully. With just a little more work the boat would be ready to go cruising again.
The next weekend we spent both evenings having dinner with friends and family, getting our social events out of the way before heading south. We were having dinner with our kids and their families on Sunday night when Bill noticed that his left pinky finger was dragging and definitely not functioning properly. When he quietly checked it out further he noticed that a couple of fingers on his left hand weren’t working. We didn’t want to alarm anyone so we just left quickly and checked with our local hospital on the way home to see if we needed to get to the closest hospital or not. Their assessment was no – it was probably just a pinched nerve. We went home and went to bed and when Bill woke up the next morning and sat down to stretch, his left arm cramped up completely for about a minute and then went completely dead. I was dialing 911 immediately and before you knew it there was an ambulance in front of our house. Bill’s arm was already starting to recover but he still got a ride to the hospital in the ambulance. Luckily a first – and hopefully a last – for us.
Long story short – they did an MRI of Bill’s brain at the local emergency room and unfortunately discovered a tumor in his brain. Undoubtedly another metastasis of his melanoma, one we’ve been dreading. This was Monday. Wednesday we went to Johns Hopkins and met with a radiation oncologist and a neurosurgeon and together with our melanoma oncologist they all decided that Bill had had a seizure and that tumor needed to come out and fast.
So…we spent all day today at Johns Hopkins getting pre-surgery testing for Bill’s brain surgery early tomorrow morning. They did a high resolution MRI where they put these markers on Bill’s head, as you can see in the picture above. He got more than a few stares walking around the huge Hopkins hospital center looking like that.
Apparently brain surgery is no big deal anymore. It doesn’t hurt that the tumor is right on the surface of the brain. The doctor is quite confident all will be fine. Bill will be in the hospital 2-3 days. Hopefully it will fix the weakness he still has in his left hand. This will be followed up with more radiation and then back to the immunotherapy he’s been getting for now. With all this going on we’ve decided that this is not a good time to move back on the boat. We are still hoping to go south but we are pretty certain it’s not going to happen. Maybe we’ll be all set for Maine in June!
01 October 2015 | Annapolis, Maryland
It’s been a pretty tough week with unfortunate weather and health issues.
At least we finally got the boat back together! It’s not 100% complete but its good enough to start letting our friends see it. It looks really great, as long as you don’t look too closely. Of course now I am all nervous about messing it up – that is something that I am going to have to get over. We excel at messing things up!
This weekend is the annual gathering of our sailing organization, the Seven Seas Cruising Association, in Annapolis. We worked hard to get the boat ready to be able to sail to the Gam, as it is called. We went back and forth on whether we wanted to go by boat or car. Bill is still varnishing our pull down screens so the boat doesn’t have any screens on our hatches right now. Then we saw the weather report included a lot of rain and wind. Then it got even worse, a hurricane was heading north. For the past two days we’ve been watching all the reports. They haven’t been sure what track the hurricane, Joaquin, was going to take. In the past we have taken the boat to our nearby hurricane hole and slept on it during the storm to make sure the boat was safe. Yesterday that was looking like a distinct probability. We also considered taking the boat to the Rhode River where the Gam is being held. We thought we could probably get a protected spot to anchor there. Then it seemed like it wasn’t likely the hurricane was going to come this way so we decided just to prepare the boat the best we could in the marina. We spent hours in the rain tying up the sails and putting extra lines on the boat, as you can see in the picture above. Late today the reports seem to say that the hurricane won’t be coming up the Chesapeake Bay. That is much better for us. We will keep watching until Joaquin passes.
Besides all our worrying about the hurricane it hasn’t been a very good health week either. Bill’s leg has been continuing to change every day. We have been working on the premise that the kind of gross changes are proving that the treatments Bill has been getting are working. This week Bill had his third infusion. We always see the Annapolis oncologist before the infusion. She made it clear that she didn’t think the treatments were working at all but she was willing to let him have his third treatment. This is completely different than the impressions that the Johns Hopkins oncologist has given us. Hearing her say that was kind of a slap in the face. Even worse though was, after trying to process that information, Bill asked her to approve the colonoscopy he has scheduled in a couple of weeks. She told him to cancel it. She said it wasn’t really worth the risk to scan for cancer somewhere else when he already has cancer. When pressed further she said they don’t do diagnostic scanning for people with his life expectancy. We were both in shock. Bill decided she has given up on him. She is not a melanoma expert so she is probably not up on other possible treatments. The Johns Hopkins doctor has already told us at least two other treatments we might be able to try if this truly is not working. Bill has a call into him to see what he has to say about his current status, and maybe to find a referral for another oncologist in Annapolis who might know more about melanoma. In the meantime Bill has another CT scan scheduled in a couple of weeks. Hopefully that will tell us more about what is really happening in his body.
For now though we are going with the theory that we are still going cruising in another month. We should be able to make a more educated decision in another three weeks. Until then we are going to continue to get ready. We are hoping that in our next blog update we will finally be able to show you some of the upgrades we have made on the boat.
Varnish and a New Cancer Treatment
14 August 2015 | Annapolis, Maryland
We have been working steadily on the interior varnish on the boat. What a job!! We are happy to report that the whole interior has now been completely varnished. If only we could report that the boat is ready to sail. Nope. We took everything off the boat that was capable of coming off. We’ve been varnishing those pieces at home since last September, with just a couple of months off during the winter to deal with all Bill’s health issues. If you’ve been in my house in the past five months, with very few exceptions, you have seen our dining room turned into a varnishing station.
Finally, about two weeks ago, we had everything off the boat that we could, including about half the floor. Then we prepped the whole interior, except for the head which we had completed last fall. Every day since then Bill has put another coat of varnish on about half the boat, as you can see in the picture above. That is all we could handle at one time, and that took about 3-4 hours each day. Today we finally pulled all the protective tape off. We still have the floor to do, and a few miscellaneous pieces that we took off at the end. We feel like we’ve finally made progress on the varnishing though.
Next up – we have to start putting the boat back together. It’s not going to be easy. We still have to do the floor too, and that certainly won’t be easy either. But progress is progress and although we say absolutely every day we wish we hadn’t ever started this project we are glad to be this far on it.
In between all this varnishing Bill has been going through a lot of cancer related stuff. He was having a really bad time with side effects of the targeted drugs he has been taking and a horrible cough, which we think was a side effect of not being able to take some medicine he has always taken for acid reflux while he was on those drugs. Things were pretty awful for a couple of weeks but after tweaking the dosages and stopping for a couple of days they have gotten much better. The bad news is that it apparently doesn’t matter if the side effects are better because the tumor on Bill’s leg has started to grow again. The doctor has decided that the drugs have stopped working. We watch the tumor every day and every day it looks a bit different than the day before.
The doctor has decided we need to move onto the next treatment, and soon. So on Monday morning. Bill is starting the next immunotherapy infusion drug, Keytruda. It’s supposed to have less side effects and a higher success rate than the last infusion therapy. We are very optimistic about this one. About 40% of the patients have tumor shrinkage of 50% or more. Another 10%-20% have the cancer either stop growing or shrink somewhat. If you have any kind of positive result the effect should last for years. Unfortunately it needs to be done every three weeks for at least one year (possibly two) as long as it’s working. We should know in a month or two if it is working. Bill has already started looking at airline prices from the Bahamas and Virgin Islands. He will need to come home, or someplace in the U.S., every three weeks for his infusion. I have already started to wonder what am I going to do alone on a boat for 2-3 days every three weeks. It doesn’t make sense for both of us to fly home.
For now though we have a big job putting the boat back together and I would like to sail it before it’s time to leave for the winter.
Things Change Quickly
15 July 2015 | Annapolis, Maryland
I just re-read the post I made a little over a month ago. How quickly things change. We were excited about the great scan results but less than a week after that posting Bill had a new lump growing in his leg. The doctor said it needed to come out so he had a quick and easy surgery and no one was surprised that it turned out to be melanoma again. Unfortunately it didn't take long for another lump to start growing again, and quickly. At that point the doctor put him back on the original targeted drug therapy that worked so well last November to shrink the lump again with the intention of cutting it out and doing another skin graft. Bill suggested having another chest CT scan before starting the drugs again and the doctor agreed. Unfortunately the scan showed a 22mm tumor in the left lung and a 6mm tumor in the right. That's a small amount of cancer but still not a good thing.
Bill has now been taking the original targeted drugs for three weeks. Yesterday we went to see the Johns Hopkins oncologist to discuss what happens next. We have felt very unsettled recently, so many things are up in the air. After seeing the doctor though we feel a little better. The doctor is confident that the immunotherapy infusions Bill had from March through May are not going to work. He told us we have two options right now. The first is to continue the original targeted drugs until they stop working. On average they only work about nine months (and we've already done five months) but some people have had them work for up to three years. Since Bill has such a small amount of cancer in his body he may be one of those people who the drugs work longer on. It's a good option, but in the past two or three days Bill has had some uncomfortable side effects so we aren't sure how long we want to continue on them.
The second option is to go with the next approved immunotherapy drug infusion, Keytruda. The good news is that it has less side effects, a higher success rate, and works more quickly than the first infusion drug, Yervoy. The bad news is that it needs to be given every three weeks for a minimum of a year if it is working at all. The doctor decided that there was no point in having the new lump taken off - so no more surgery! Bill keeps saying the lump is like the canary in the coal mine - no matter what treatment he has if it's not working that lump will start growing again.
Bill is determined that we are going to continue our cruising life. Either way we go - with the drugs or the infusions - we can make that work while we travel south on the boat. If Bill is getting the infusions then he can come home somehow, or find an alternate place to have them. It is not impossible to do that every three weeks. It will be more expensive and certainly a pain in the neck, but he keeps saying its better than staying here and shoveling snow! We are still planning on leaving in early November. We aren't sure where we will end up yet - but we know it will be warmer than here!
In the mean time we've been trying to work on the boat and have done some traveling. We spent a long weekend on the Jersey shore with Bill's family. After that we took our grandson, Sam, to West Virginia and did some caving and rappelling, as you can see in the picture above. We also went to visit the National Radio Telescope Observatory in Green Bank. We had a great time but were totally exhausted when we got home.
Work on the boat is going very slowly but today we finally managed to finish our dorade project. We've been working on installing four dorades to bring more air into the cabin for months now. We are both very glad that is done. Next we are going to work on completing varnishing the interior teak - a project we wish we had never started!! I'm hoping our next blog picture will be a lovely picture of the boat's interior - no one is seeing it the way it looks now!