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Scotland, Carcinoid, etc. January 2016

We returned yesterday from Scotland. We took grandparent Christmas to the Derek, Kat and Ansel there. It was fun.

The weather was not as bad as it could have been.  Temperatures between 31 F and 40 F.  Some days of drizzle. The Scottish word ‘dreich’ describes wet, cold, overcast; we had some of that, but, no wind and storm from the North Sea.  We were fine, if a little cold, walking around the town.

This was the second trip to Anstruther that we stayed at a bed & breakfast called the ‘Lahloo Bed & Breakfast’.  It is named after an old clipper ship.  We enjoy the proprietors, the rooms, and the breakfasts. Its location is perfect, just a few blocks from our son’s house and a short block to the picturesque harbor.  If you would like to know more about it go to www.lahloobandb.co.uk.

As usual, I experienced the carcinoid syndrome for about half the trip, but it was controlled pretty well by drugs.  It did not prevent me from being able to confidently take long walks and bus rides.

Now that we are back in Denver, I will schedule the bladder procedure to remove bladder cancer.  My new urinary cancer specialist says we should probably also plan on the biologic treatments.

Also, within the next couple of months I will be scheduled for scans to assess the progression of the carcinoid cancer. A CT scan and the new (to the U.S.) GA-68 scan are in my future.  The GA-68 scan produces much better pictures of the location of the neuroendocrine cancer tumors than the octreoscans that I have had annually in the past.  When matched with the CT scan, the doctor may be able to more exactly locate the tumors in my body.  I probably will also schedule a minor, day surgery to remove two lumps from my breast to determine if they are NETs or breast cancer or just benign lumps.

You can be sure that I will write about that stuff as it happens and results are known.

May we all have the best possible outcomes,
Cy

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Ch-Ch-Ch-Changes

Welcome to those who have not visited this website!

Those who have been here before will notice a number of changes in the appearance. The theme for the blog has been getting a little too old and it was not written by WordPress so it had some weaknesses. It was incompatible with some plugins and I feared that a WordPress upgrade might break it.

WordPress has delivered some new themes so I decided to bite the bullet and customize one of the new themes. I also applied an upgrade to the music player which I had avoided prior to now. One problem that I will pursue is that you need to stop one player if you want to start another one when they are both on the same page. I will try to get that fixed.

Hope you like the new “look & feel”!

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Eight days in Scotland

Last night we returned from eight days in Scotland.  As usual, we had a fun trip. Often it was rainy and cold, but that’s what you get in Scotland in October.

The first couple of days were spent in Edinburgh.  We walked the Royal Mile from Holyrood Palace at the base of castle hill to the castle at the top of the hill.  We spent time at the National Museum of Scotland and also in various shops. We stayed at the Ibis Hotel which is about half way in the Royal Mile and an easy walk up the hill from the train station. As usual, we ate at pubs and the inexpensive vegetarian stuffed baked potato shop.  One of our evening meals was at David Bann’s which is an upscale vegetarian restaurant which never fails to deliver good food.

Then came three days in Anstruther/Cellardyke.  These are two old fishing villages so close together that you cannot tell when you move from one to the other without a sign.  Our son Derek and his wife Kat live in Cellardyke.  They bought and remodeled a wonderful 150 year old fisherman’s cottage built right into the seawall.  On really high tide days, North Sea waves hit their home. We stayed in Anstruther at The Waterfront, which is a restaurant and bed and breakfast. It is only about four or five blocks from Derek’s house. The Waterfront is also near the Anstruther Fish Bar which has awards naming it the best fish and chips restaurant in the UK. They are very good!

Derek is a lecturer at St. Andrews University and we like the town of St. Andrews a lot, so we spent some time there shopping, walking the beach, eating and drink coffee. Derek drove us to the village of Falkland where we toured the Falkland Palace. It was an impressive tour of a restored renaissance palace. The drive through the Scottish countryside was nice as well.

We took a bus across Scotland to Glasgow to spend three days there. This is the largest city in Scotland and the third largest in the UK.  Although the city is ancient, unlike Edinburgh, very little of the ancient buildings still stand. It was renovated during the industrial age and after the World Wars.  One of the few ancient buildings still standing is Glasgow Cathedral which was started in the 12th century.  We attended the Church of Scotland evensong service there.  It was quite beautiful.

Our second day there, we toured the Glasgow School of Art which was designed and built by Charles Rennie Mackintosh, a famous Scottish architect. His style spanned both Art Nouveau and Art Deco.  He designed more than just buildings; he designed the interiors, the furniture and even the silverware and plates for his buildings.  We also ate at the Willow Tea Room which is a reconstruction of one of his famous interior designs. Unfortunately, for the rest of that day, I was somewhat ill from the cancer and afib.  Laurie was able to go to the necropolis which is a large Victorian cemetery near the Cathedral.  She tells me that it was interesting and beautiful.

The next and final day of our tour we walked a good distance through the city and visited the Kelvingrove Art Gallery and Museum.  It is the most visited attraction in the city and has some spectacular exhibits.   We took the guided tour and visited some of it ourselves.  There was a good exhibit of the Glasgow Boys who were a well-known group of Impressionists and Post-Impressionists who worked in teh 1880s and 1890s.  The art was great! However, the most impressive piece in the museum to me was Salvador Dali’s Christ of St. John of the Cross.

After touring the Kelvingrove, we walked to the Riverside Museum which is a very good transportation museum. Trains, bicycles, and lots and lots of automobiles. These are mostly British, so they seem a little strange to our eyes sometimes.  It was a good museum.  Then we had a long walk back to the hotel and another pub meal at our favorite pub in Glasgow: the Horseshoe Bar.

All in all, it was a satisfying trip, with a minimum of disruption from my ailments.

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Cardioversion appears to be successful

This morning, I had a procedure known as a “cardioversion“. This is a procedure in which the doctor shocks the heart much like you see on TV except that, in a cardioversion the purpose is to make the heartbeat get back into rhythm.

At this time, it appears to be a success.  The atrial fibrillation is gone.  It is replaced by an arrhythmia called a “bigeminy (bi-gem-i-ne)”.  This reflects a slightly abnormal heart rhythm that is usually of no serious concern in the absence of other cardiovascular disease. This condition describes a state where your heart alternates one “normal” beat with one “premature” beat.

As the afib was causing a lot of discomfort and inconvenience (like cancelled fishing trips and no exercise), this result makes me happy.  We will not know how long the treatment will remain effective until it stops.  The cardiologist says that with luck it may be good for over a year.

There was one problem that made the procedure a little more stressful. (I find it stressful when someone is going to apply a strong electric shock to my heart!)  The warfarin (anticoagulant or blood-thinner) was not at a high enough level in my blood stream.  The doctors had to do a “Transesophageal echocardiogram” which is a procedure of placing an ultrasound device down your throat and into the esophagus to get it close to the heart.  It is very uncomfortable.  However it enabled them to determine that there were no blood clots in the atrium of my heart and to go ahead with the cardioversion.

I am told now that I should start biking, fishing and exercising to “test it out”.  All is good at this time.  Thanks to all for the positive thoughts and the prayers that were aimed my way.

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Heart Is Pumping Just Fine

I just received news from the cardiologist’s office that the pumping function of my heart is fine according to the echocardiogram.  Well within their parameters. Also, the Nuclear Stress Test indicates that there are no blockages in the veins and arteries.

As I told you in Cardiac Stress Tests, they were concerned with my heart’s pumping function after the Nuclear Stress Test. Last Thursday I had the echocardiogram test.

To all my family in friends, I apologize for all these false alarms.  I do not want to be the boy who cried wolf!

I am very pleased with Kaiser Permanente doctors and their constant pursuit of potential problems in me.  Occasionally, I feel that I get stampeded with the concern.

All in all, I am very lucky that carcinoid cancer has not made me any sicker and that the treatments seem to be holding it steady for now.  I am lucky also because this atrial fibrillation (afib) is treatable.  Even though I complain about having to miss fishing trips and not riding my bike, the larger picture is that I am still moving on.

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Cardiac Stress Tests

Last Monday July 9th, as I was told in “Walk Don’t Bike” I had a cardiac stress test. That consists of being hooked up to an electrocardiogram (ECG) and walking faster and faster up a steeper and steeper incline while the medicos monitor the ECG. It’s a common test and I know other members of our family have had them. The doctors are looking for possible blockages that would cause symptoms of pain or pressure over my heart.

The results were inconclusive.  I was told that my atrial fibrillation (afib) was so strong that it masked anything else on the ECG.  I was also told that my heart rate had jumped from 85 to 180 bpm very quickly.  Five years ago when I trained in spinning classes, it took 20 minutes of very strenuous work to get to that rate and of course I made no attempt to stay that high.  Also, after sitting and talking about the test results, I stood up and got dizzy.  The nurses immediately took my blood pressure and pulse rate.   My blood pressure fell like it is supposed to when you stand up.  The heart rate also fell!  Definitely not supposed to.  Again, my body works a little differently.

Since there were no good results, I was scheduled for a “nuclear stress test” last Friday the13th.  For this test, I was injected with a radioactive substance designed to hang around the heart area.  Then I was scanned by a machine which makes pictures of the heart and all the blood vessels around the heart. This was the before picture.  Because of the afib problem with actual exercise, I was injected with a drug which expands the blood vessels and stimulates the heart and only walked very slowly on the treadmill.  After that, I was scanned by the machine again so that the doctors could see any differences.

I just got the results today.  Again, not very conclusive.  But the cardiologist thinks there are signals of reduced pumping ability in my heart.  So on Thursday the 19th, I will have an echocardiogram like I had a couple of months ago but they will be looking for pumping problems.

Yesterday Laurie and I went with some friends to their condo in Frisco in the Colorado mountains.   I had intended to stay 3 days and fish.  That first night I was up most of the night with shortness of breath, difficulty getting enough air.  I also developed a splitting headache and my carcinoid diarrhea started up.  We came home this morning and I was feeling much better within a couple of hours.  My cardiologist simply says make sure to perform no strenuous exercise.

Once again, I fit the phrase my team surgeon used: “You have the misfortune of being an interesting case!”  This seems to me to be equivalent to “May you live in interesting times.” which is reputed to be an ancient Chinese curse.

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No Pacemaker For Now!

We met with the cardiac specialist today.  He is actually a specialist in Cardiac Electrophysiology.  In essence, there are a number of options for my treatment.  A pacemaker is actually about last on the list. This is not what the original cardiologist led me to believe: “Walk Don’t Bike”

The list includes several other possibilities but the upshot is that Laurie and I have chosen to go with a procedure called Cardioversion.  Essentially it is a mild electric shock to coax the heart back to a regular rhythm.  It works about 75% of the time and is not permanent but can be repeated.  If it works, it could last as much as 5 years before it would need to be repeated.  It is an outpatient procedure.

If it works even temporarily, it can give us an idea of whether the symptoms I have are directly related to atrial fibrillation (AFIB) or maybe another problem.

If it does not work, then we will proceed down the list of cardioversion and drugs, other drugs, something called ablation (which seems dangerous!), ablation and drugs, and finally pacemaker.

The cardioversion is currently scheduled for August 6, 2012 because I have to start taking warfarin and adjust to that first.

A shout out and thanks to all my family and friends for the their love, support, and patience.

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Walk Don’t Bike

Well, I’ve been ordered not to bicycle any significant distance. So now I simply walk 45 minutes to an hour every day.  More boring, but it gets me outside.

As I reported in “Atrial Fibrillation” I have been told to wear a heart monitor (holter monitor) 24/7 for two weeks. I have one day left. It’s amazing technology. Whenever I have a “symptom” (ordinarily dizziness, woozyness, difficulty breathing), I press the SYMPTOM button on the device and it records a few seconds of history of my heart. It also monitors my heart and records any time that it thinks things are not right. Whenever I have recorded symptoms or if none, whenever it tells me to, I dial a number and transmit the recorded information to the business which specializes in this. There is always a specialist on the phone who could help me if I were having real cardio problems.

My cardiologist logs on every day and monitors my symptoms.  Last week, after 4 days of monitoring, the cardio nurse called and told me not to do any very strenuous activity including long bike rides.  She also had me make an appointment with a pacemaker specialist.  I have that Monday.

The monitor has shown that I definitely have afib and that it is pretty constant.  It also has shown that I have episodes of racing heart (tachycardia) and slow heart rate (bradycardia).  This means that they cannot just give me drugs to slow down the tachycardia.  The drugs could make my heart go far too slow.  Maybe the solution would be a pacemaker to keep my heart from going too slow and drugs to keep it from going too fast.  This is not decided or recommended yet.

This week I also had a few symptoms of light pain or heaviness in the chest.  The monitor did not show anything going on.  This made the cardiologist concerned that I might be having little heart attacks but they later decided that it was probably a form of heart burn.  None-the-less, I am now scheduled for a cardio stress test on the 9th. Lucky me.  The carcinoid cancer symptom of acid stomach has been recurring more lately than at any time since I had the chemoembolization last August.  This worries me a little.  The blood tests that I have every two months do not show an upward trend in gastrin in my blood, but with carcinoid, we can get symptoms without the blood tests reflecting more activity.  It’s actually pretty common.  No one has been able to explain that to me in a way that I could understand.

On the link between carcinoid tumor and atrial fibrillation, my oncologist still thinks it’s possible but my cardiologist does not think so.  It’s likely the treatments would be the same either way.

All of this troubles Laurie and me a great deal of course.  Pema Chodron, a famous America Buddhist nun and prolific writer, advises us to embrace our feelings, not avoid them.  I work daily on meditation to help maintain a sense of serenity.  Not being a Buddha myself, it does not always work but it helps.  Laurie is also a rock in these times.  I know this is very difficult for her but she keeps moving forward and being her practical self.

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CT Scan Results – May 29, 2012

I had my quarterly ct scan, one week ago.  My oncologist reports this:

“The main liver lesion is slightly smaller on scan and the others are stable. No new lesions noted.”

This is great news! I have been feeling some symptoms in the last week and had feared a much worse scan.  The wait and see attitude of the team last quarter is doing OK so far.

Even better, Laurie and I are on Hawaii, the big island to celebrate our anniversary and my birthday.   We just spent the day at Volcano National Park. It is awesome! We are staying at a resort in Kailua-Kona or Kailua or Kona depending on what you like to call it.

We will be driving around on the island and looking for beaches and good food until Tuesday.  Aloha!

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A Good Day for Biking

I have just returned and cleaned up from a 31 mile bike ride.  It is the longest ride this year.   I have been worried that I was physically well enough and fit enough to do over 30 miles without undue pain or symptoms. And the answer is… No problem!  No sign of the light headedness or the getting winded, difficult to recover kind of thing.

The ride took 2 hours 45 minutes.  5 years ago when I was preparing for Ride the Rockies, I would have been disappointed at anything more than 2 hours on the easy trails of Denver.  But now my carcinoid cancer has progressed and I will be 65 years old in 4 days.  I’m working toward being in better shape this summer.

I am inspired by Tracy Krulik and her blog: I Have Cancer. And I’ve Never Felt Better.  She is a professional author and her blog features articles about cancer, about healthy living, healthy recipes and about exercise.  She is an avid biker.

Certainly for me, biking, the weight room, walking, and  fly-fishing keep my feeling better (physically and mentally) and even looking better than people expect.  I hope to keep surprising them.

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Home from the Mountains

Yesterday I returned from 5 days and nights in the Colorado mountains. I was fly fishing with some friends.  This spring trip is a tradition of ours that has lasted many years.  A little extra fun this year was that one man came who had never fly fished. He is our age and an avid outdoorsman. He caught on quickly and got a number of fish.

We spent two nights in Avon at one of the guys’ condo. It is on the Eagle river. The fishing was demanding, but we caught trout. We fished using “blue winged olive” nymphs which float at the bottom of the river. We always release the fish we catch. We eat well though and in Avon we cooked our own dinners.

We then spent two nights in Salida on the Arkansas river. We have a favorite, comfortable motel (the Woodland) which we always use there. Again the fishing was not easy, but we caught fish and had a good time. The Arkansas has a hatch of caddis flies called the “Mother’s Day hatch”. When it is on, the fish are in a feeding frenzy. Although the hatch had started downstream we only saw a few of the caddis flies. The fish would sometimes come to the dry fly or the emerger or the nymph of the caddis fly. We usually fished with a two fly rig, either two nymphs or a dry fly and a nymph. About half the fish I caught came to a dry fly caddis, the others to a caddis nymph or emerger. We tried restaurants that I was not familiar with and the food was good. On these trips we always buy lots of lunch food at the deli counters of grocery stores and make lunch streamside. It’s fun and a nice break in the fishing, which can be actually pretty active exercise.

On Thursday we drove back to Avon for the night. On the way we stopped at a beautiful place called Brown’s Canyon and fished for several hours. I had my best day of catching there. I fished a two fly rig consisting of a dry fly called an Irrisistible and a red Copper John nymph which represents a may fly nymph. All the trout took the nymph. The last fish of the trip came to another fly that I had switched to, an olive flashback nymph which I fished as an emerger. In Avon we had another good home cooked meal that night and came home on Friday.

It is wonderful how such a trip can energize a person. The carcinoid symptoms I experienced were very minor and did not interfere with my enjoyment of the trip at all.

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Mobile Me

The world has gone mobile.  I have just activated a feature of the WordPress blog software which will detect if you are visiting the site on a mobile device. It will show the mobile phone user a special view of the website that should be usable.

Please leave comments if the site was working before on your mobile device or if this new view is no good for your device (tell me what your device is).

I hope everyone can enjoy this!