Mus's Musings

The Final Posting

2008-10-27T11:32:00.000-07:00

I’m sorry to report that in the end, my Grandpa did not have the opportunity to choose between chemo and nature. At 1:30 on the morning of October 17, with my Grandma holding his hand and clinging to his arm, he peacefully succumbed to complications from the disease that has plagued him for nearly a year and half.

On his final Saturday, Grandpa went mushroom hunting in the forest that he loved with Grandma and their friend Don Shaffer. The next day on the way back to Seattle, he enjoyed a bowl of chili at one of his favorite restaurants, the Ranch House Barbeque in Olympia. Don suggested that they go directly to the hospital from there but Grandpa wanted to give it one more night. Late Monday morning, Grandma and daughter Leah took him to the ER (with a requested stop by the chiropractor’s for an adjustment) and he was admitted on Monday afternoon. The diagnosis was another stroke, this time affecting his right side. On Tuesday his left lung had collapsed and his strokes continued, but he was still able to answer his own phone. By Wednesday, the heart that has fought tachycardia for more than a year finally began to give in and he began to suffer the symptoms of a heart attack. That evening, he could no longer see or speak. By Thursday, Grandpa was communicating in a “yes,” “no” fashion by moving one of his feet and began to actually suffer heart attacks that afternoon. He had his daughters, Leah and Alicia, there to sooth him with the very songs he sang to them when they were young. Dr. West told Grandma and my cousin Conor that the strokes had become overwhelming, and while we could hope for a miracle, it was time to make him comfortable. Dr. West also reminded them that the one thing he had learned from Grandpa was that quality of life was the most important thing to him. As his final Friday dawned, John Musgrave, Renaissance man, loving husband, father of five, grandfather of twelve, great grandfather of seven, and friend of many passed away surrounded in presence and in spirit by those who loved him.

It is not surprising to me that my grandfather was able to fight cancer with such a positive attitude. My Grandpa passionately loved living and was a very competitive man, and he was also blessed by a team of doctors that we are sure is unparalleled. From my Grandma (and all of us), “Our family would like to thank all of the staff at Swedish Medical Center and Swedish Cancer Institute, his primary care physician Timothy Johnson, his cardiologist Matthew Voorsanger, his caregiver Carrington, the doctors and nurses at Swedish/Providence Cherry Hill Hospital who cared for him during his last few days and hours, and especially his oncologist Dr. Howard (Jack) West, and Ruth and Bernadine. John was proud to call Dr. West his oncologist and thought the world of him. Dr. West helped guide us through the last year and a half with just the right touch of humor and advice.” Personally I would like to thank Doctor West for permitting Grandpa to come to my wedding immediately after a chemo treatment – risky, but thankfully along the lines of what grandpa considered to be living, rather that merely life. I would also like to thank the staff at St. Mary’s in San Francisco where Grandpa was initially treated for his first stroke – thank you for helping him to heal and for keeping him there long enough that Conor, Alison, Balazs and I were able to spend time with him and give him ice cream in the final stretch.

A memorial service will be held on November 8 from 1-4pm at Hotel Andra in Belltown, just north of downtown Seattle. Anyone who was touched by my Grandpa is welcome to celebrate his life with us, and to help us remember him as he was – a profound and amazing man who all of us are better for having known. In lieu of flowers we will be making a contribution to the Seattle Statue of Liberty Plaza Park on Alki to honor Grandpa and to provide funds for the current renovation and future maintenance of the park. Please email johnmusgravememorial@gmail.com if you would like to contribute memories or funds for this project.

On to the next journey…

John Robert Musgrave

2008-10-27T11:14:00.000-07:00

John Robert Musgrave lived his life to the fullest and his absence will be felt by many. He passed away on October 17 in Seattle after complications from lung cancer. He will be sorely missed for his wise counsel, his wonderful sense of humor, and of course his excellent cooking.

The devoted family man, mentor, and friend eclipsed the description "renaissance man" as evidenced by success in his careers and many hobbies. Anything worth doing, he believed, was worth putting in your all.

John was born in Kansas City, Kansas on January 23, 1934 and grew up in Concordia, Missouri as a Southern Baptist Minister's son. He was student body president, basketball star, homecoming king, and his beautifully deep voice resonated in multiple singing groups. John graduated at the top of his class from the University of Missouri Journalism School. His first job was as a newspaper reporter in Blytheville, Arkansas where he found himself in the thick of the Little Rock segregation era.

His talents at basketball earned him a spot on the Boeing semi-pro team in Wichita, KS, and a job as a reporter on the company paper launched his career into marketing. Boeing ultimately sent John to Seattle where he published the company-wide Boeing newspaper and discovered his little piece of heaven on earth. After several years, Boeing transferred him to head up the Marketing Department of the Vertol division in Philadelphia where he traveled the world promoting their helicopters.

In 1971, he left Boeing to work for the Auerbach Corporation, one of the world's first computer companies, in Philadelphia. In late 1973, he was approached by an executive search firm to consider going to Spokane, Washington to help the floundering World's Fair. Seeing it as an incredible challenge and also a way to return to his beloved Washington, he took the job and moved his family to Spokane. His role as Vice President of Marketing in charge of public and press relations, publicity and ticketing helped Expo 74 open on schedule and its success transformed the city.

In 1975, he started his own public relations firm, JRM & Associates, Inc., where he was involved in events such as managing trade shows and major events such as the World Swimming Championships in Guayaquil, Ecuador. His company also started Ticketmaster in the Seattle area. One of the responsibilities he took on during that time was as Vice President of Marketing for the 1980 Winter Olympics in Lake Placid, NY where he was responsible for marketing, publicity, public relations and all revenue, including licensed products, ticketing and television rights. It was an experience of a lifetime.

In the early 1980s, John moved back to Seattle and was very active in the West Seattle community. He served as President of the West Seattle Chamber and as a member of the noise reduction committee for the 3rd runway at SeaTac Airport, the city-wide Alaskan Way Viaduct Committee, and the transportation committee, which helped plan the high level bridge, the Spokane street viaduct expansion, and the low level bridge replacement He helped start Greater Harbor 2000, a community based organization that created a new corridor plan for the Alki, Harbor Avenue, Spokane Street corridor, and served on the oversight committee that worked on plans for Pier 1/Pier 2, including the experimental water taxi.

His professional life for the last 25 included many facets of the real estate world, including selling residential real estate, brokering the West Seattle office of Coldwell Banker, and for the last 15 years as Executive Business Consultant for Coldwell Banker Corporate with responsibilities for all of the affiliate offices in Washington State, Alaska and Portland, OR.

While excelling in his professional life, John also spent his time on his many hobbies. His passions included wine collecting, mushroom picking, traveling, hiking, go-carting, fishing, and, most importantly, cooking. He spent much time racing and fixing cars with his grandson, Conor.

We all hope we can live up to John's decency, honesty and love of living. He was a tall, proud "John Wayne" kind of man who has touched so many lives.

John is survived by his wife of 29 years, Colleen; five daughters: Mary Rosner (Mike), Jeanine Hopping (Mack), Jacque Musgrave, Alicia Thompson (Ken) and Leah Applewhite; 12 grandchildren and seven great-grandchildren. He also leaves behind the mother of his children, Jan Musgrave Zwetsch (Gil), who has been a great supporter of John throughout their lives, his brother Jim (Jan), and his sisters Delcie Wakefield (Bill) and Ruth Smith, as well as numerous nieces and nephews and friends.
A celebration of his life will be held from 1-4pm, Nov. 8 at Hotel Andra, 2000 Fourth Ave, Seattle. In lieu of flowers, donations are being accepted to honor him at the Statue of Liberty Plaza at Alki Beach and to support the Plaza maintenance fund. More info at John's blog http://mussmusings.blogspot.com.

NOT SO GOOD NEWS

2008-10-09T13:41:00.000-07:00

My CT scan yesterday showed a worsening of my condition. Other tests showed thar my oxygen absorption rate has fallen to 80 which is very low. So, the doctor put me on oxegen.It is a bit of a pain to haul around, but does make me feel better. It has not however alleviated the severe shortness of breath we have been experiencing the last few days. The Tarceva was obviously doing no good so we are stopping that. Since that drug causes shortness of breath I am hoping that condition will improve. I have a couple of choices now. Give chemo another try or do nothing and let nature take its course. I'll let you know what I decide.

NOT MUCH NEW TO REPORT

2008-10-03T17:05:00.000-07:00

The political scene has been interesting so that has kept me occupied. I think I am becoming a news wonk. Like everyone else I suspect I view everything through my own narrow lens, but I think it is interesting to watch people supposedly intelligent enough to be called experts differ completely on their analysis depending on whether they have a D or an R behind their name. The subject doesn't seem to make any difference. If the Ds say one thing the Rs will take the opposite point of view and vice versa. It makes you think that there is very little independent thought going on these days. It will probably come as a surprise to no one that I am supporting the Obama/Biden ticket. I truly believe we need a fresh approach to things and I believe those two will give us that. I wish everyone would join me in that choice, but then, I guess that is just my narrow point of view. I have been having a lot of trouble with fatigue the last couple of days. Of couse Afib, lung cancer, amiodarone and tarceva all have fatigue as side effects so I guess I shouldn't be surprised. I have another CTscan next Wednesday so will let you know how that goes.

UPDATE

2008-09-18T16:56:00.000-07:00

My visit to the doctor today was uneventful. We did a blood test, but the results weren't back yet so we didn't learn anything from that. The main purpose of the visit was to assess how I am doing with Tarceva. So far I am having very minor side effects. So the next question is whether the medicine is doing any good. We will have another CTscan on Oct. 8 to see if the medicine is working. If it is we will continue to take it. I will keep you posted.

GOOD NEWS

2008-09-04T17:07:00.000-07:00

Our visit to the doctor today was quite encouraging. The cancer continues to show no sign of growth. In fact the doc says it has actually reduced to a small degee. He is recommending that I start on a drug called Tarceva. It is a once a day pill that is designed to keep the cancer from growing. So we will give it a try. There are some potential side effects, but the doc doesn't think they will be too severe. If that turns out to be true we will keep taking it. If not we can stop taking it. I'll be seeing the doc again in two weeks to assess results. I'll keep you informed.

PROGRESS

2008-09-03T10:54:00.000-07:00

comes slowly, but we are making progress. Physically
I am doing quite well, gaining strength and walking a mile a day. My hands are still a problem, but they are getting better. I am just impatient and want it to be quicker. I am sure that I will recover fully from the effects of the stroke. The wild card in all of this is the cancer. We will find out more about that tomorrow as I am scheduled for another CTScan. Our hope is that the cancer will still be showing no sign of progression. I will post again tomorrow and let you know where we stand.

Home Sweet Home

2008-08-06T13:48:00.000-07:00

Sorry for the absence of posts lately, but my hands are still not working very well so this will be short. Being home is really nice and I think I am making good progress with my rehabilitation. Both a physical and occupational therapist are coming to the house once a week. They have given me a rigorous regimen of exercises and my caregiver sees to it that I stick to the schedule. I also walk every day and am up a quarter of a mile. I use a cane while walking and occasionally use my walker in the house, but I am doing more and more unaided. Well that's all I can handle for now, but will try to do better as things progress.

More Adventures

2008-07-12T18:49:00.000-07:00

Much has happened since my last post. I am in the hospital in San Francisco having come here to have a nice vacation with my grandson and my granddaughter. Good plans don't always work out and in this case I had a stroke sometime Saturday night and have been pretty much unable to do much of anything since. However, we are fighting the good fight, we're in rehab, and I think some progress is being made.
I'm hoping to be able to go home early next week and to continue rehab in Seattle since all of my doctors are there. My personal belief is you always heal better at home and I've got to believe I will be more comfortable around things with which I am familiar, so we will see how it all goes and we'll try to keep you posted.
This post is being sent to you thanks to the services of my granddaughter, Sarah, as it's impossible for me at this point to type. So, we'll be in touch.

NEWS

2008-06-12T12:27:00.000-07:00

No news is good news is an old adage, but some news is not always bad, nor is it always good. Sometimes it’s somewhere in between. My new news is somewhere in between or as my oncologist put it I have gone from “too good to be true” to “not so bad.”. The CT scan done Tuesday showed a large pleural effusion (fluid) on the left lung and the cancer is showing some activity. Nothing terribly alarming, but it is there. The fluid was causing some serious breathlessness so I had that drained this morning, We got about two and one-half liters. So I am feeling much better and when the lung adjusts, it usually takes a day, I will be feeling fine again and will be able to breath normally. We have two choices. Wait awhile and see if the cancer and fluid build up continue. In that scenario I would have checkups every three weeks. The other choice is to go back on chemo with the hope that we can get back to “too good to be true.” My choice is the go back on chemo and nip this in the bud if we can. We will taking a smaller dose of Alimta than we did the last time and the hope is that I will be able to tolerate it and that it will do as good a job on the cancer as it did the last time. The first treatment will be in two weeks. If the chemo has adverse effects to the point that I can’t function normally then we’ll make another decision. None of this is particularly surprising, Cancers were born to grow and I knew that at some point we would have to fight this thing again. So, we will. I am disappointed, but not bummed. I know I will continue to have all of the great support and positive thoughts that I have had in the past and you can’t know how much I appreciate that

ON TO THE FUTURE

2008-06-06T15:43:00.000-07:00

The lack of postings over the last several weeks sh0uld serve as a good indicator that things are going well. I am fully recovered from the fall and I am feeling great. I will go in for another CT scan this coming Tuesday and we are hoping that it will yield a good result. I am still working with the
Afib problem, but it seems to be much better now. I don't know if I mentioned it in previous posts, but I have also been diagnosed with diabetes so I am taking insulin.

I have gone back to work and have been doing some traveling. Other than some fatigue I have been getting along just fine.

With my health problems pretty much under control I will have to find other things to talk about. Politics seems like a good place to start. Now that Obama has the Demo side wrapped up we'll begin the real race. I have misgivings about both candidates. How do you feel?

UPDATE

2008-05-10T15:03:00.000-07:00

I am rapidly recovering from the effects of my fall. There is still some soreness in my legs, but the pain is pretty much gone from my ribs. I had been curious why my legs had been so badly bruised because I didn’t think they had been directly involved in the fall. My doctor tells me that the bruises are caused by the blood from the internal bleeding settling in my legs. Good old gravity at work. Nonetheless is was quite painful and I am very grateful that I am now much more comfortable and able to get around without grimacing. The really good news is that I had an appointment with my oncologist on Tuesday and the cancer in my lung is essentially gone and there is no sign of growth. Because of the fall and the issues with my heart my doctor said, “I am not used to having one of my patients whose cancer is the third or fourth most serious thing they have to deal with.” So that part is really good and if I can stay away from any new setbacks I will be in great shape.

EXPLANATION

2008-05-03T16:44:00.000-07:00

The bruises you see in the previous post are on my legs. That has been and still is quite painful but not life threatening. The big problem was the bruised liver which I was not able to take a picture of. However, if the bruises were this bad on my legs you can only imagine what trauma my liver suffered. So, I am a lucky puppy that everything is healing properly.

WHAT HAPPENS WHEN YOU DON'T PAY ATTENTION

2008-05-03T13:13:00.000-07:00

You all know about the fall but I thought you might like to see my bruises and also see that life in the hospital isn't all that bad. There is always someone around fussing over you and getting you whatever you want. The downside of that it is a difficult to get any sustained sleep when you are being awakened every two hours for meds, checking life signs or, it sometimes seems, just waking you up for the fun of it. Another downside is that the food is not that exciting. I am home now and the care here is just as good as the hospital and it's a lot more comfortable being in familiar surroundings. My daughter Jeanine is here doing yeoman service and appropriately babying me. It's working because I am feeling a lot better, the pain is subsiding, my bodily functions are operating properly, I have a good appetite and my balance is better, although I am using a walker just to be safe. So, I am on the mend and expect to improve every day.

TWO FORWARD, ONE BACK

2008-04-26T14:08:00.000-07:00

Somewhat better than one forward and two back, none the less it is somewhat frustrating to get a set back at this point when we were feeling so good, exercising and in general getting back to normal. But now I am in the hospital trying to recover from a bad fall that I experienced two weeks ago this coming Sunday. At first we thought the fall was not too bad but the bruises began to appear and the soreness was progressively worse. So I went to my GP a week ago yesterday and it was his judgement that I had bruised ribs so prescribed some pain medicine and sent me home. Our fear, of course, was that I had some internal injuries. I have been on a heavy dose of blood thinners, so internal bleeding could be very critical. However, the x-ray and the doctor’s examination seemed to indicate that I had not suffered any internal damage. The soreness continued to get worse so in the middle of the night this past Thursday the pain became intolerable and I was convinced that I had something much more serious than bruised ribs so we went to the ER. I had every kind of test you can imagine, a chest scan, a tummy scan, a brain scan and blood tests. The upshot is that I have a severely bruised liver that has bled some. We think the active bleeding has stopped, but my blood count is quite low. At the moment we are observing. Surgery is still a possibility but we are hoping that won’t be necessary.The blood count will be the determining factor. I am having blood transfusions so if we can get the blood count under control we can avoid surgery. So quite the adventure. It’s 2 p.m. on Saturday as I write this so I should have some news in the morning

UPDATE

2008-04-17T14:59:00.000-07:00

Not a lot new to report other than that I am feeling good, have gone back to work on a somewhat limited basis and in general am getting life back to normal. Let's hope it can stay that way, at least for awhile. I have slowly gotten used to the mask. I kept it on one night for a total of seven hours which is the record. Usually I can handle it for about four hours and then my nose and face start to itch and I have to take it off. I don't know if it is doing any good or not and I guess I will have to have another all night sleep test to find out. I'll let you know. The heart situation is a pain in the neck and the drugs are really a drag. I want to get off of them ASAP. I meet with the cardiologist one week from today.

UPDATE

2008-04-09T21:26:00.000-07:00

Well, once again the doctor decided that my blood is too thick and prone to clotting to safely do the shock treatment so we are still where we were. I am not sure what comes next. I have been on blood thinner for a long time so don't how or when my blood might get thinner. I will be talking to the doc tomorrow and if I learn anything new I will post the information.

UPDATE

2008-04-07T09:38:00.000-07:00

The transesophageal echocardiogram will take place at 1 p.m. Wednesday and if all goes well the zap will follow.

UPDATE

2008-04-04T10:50:00.000-07:00

I met with my cardiologist yesterday and we have scheduled a transesophageal echocardiogram for either Tuesday or Wednesday next week. I will update this when I know for sure which day the procedure will take place. If everything looks good they will then give me the shock treatment to get my heart back in rhythm. That’s really the only new thing to report. I am feeling good, walking everyday, except when doctors’ appointments get in the way, and in general doing well.

NO PROGRESSION!

2008-03-26T10:58:00.000-07:00

NO PROGRESSION

The good news yesterday was that my CT scan showed there has been no progression of my lung cancer and the amount of cancer is “very little” according to my doctor. By the way, I don’t know that I have talked much about my doctor in these posts, but in my mind he ranks right up there with the great people I have met during my life. His skill, knowledge and practical approach to medicine are quite impressive. I have included a link to his blog, Onctalk, on my blog and recommend that if you haven’t already done so you should give it a look.

Now don’t get the idea that we have fashioned a “cure”. I still have the cancer, it could start growing again at any time, or it could metastasize to some other part of my body. We are going to maintain an every six weeks monitoring schedule to check its progress. For now, I’m going to enjoy the relief from treatment. Hopefully I will get my heart situation (see previous post "So We Will Wait Awhile) straightened out in the next couple of weeks and when that happens I will be able to get back to exercising and regaining my strength.

MASK REPORT

Several of you have asked about the mask. I have tried it now for the last two nights. The first night I did fall asleep with it and woke up after an hour with a bit of a cough. A cough doesn’t work too well with the mask so I abandoned it and slept pretty well the rest of the night except I think apprehension related to the upcoming CT scan the next day hampered my sleep. Last night, relieved by the scan report, I slept for two hours with the mask. I’m not quite sure why I wanted to get rid of it at that point but I did and I slept really great the rest of the night. So we will keep trying.

Facing the Mask or Masking the Face?

2008-03-20T10:24:00.000-07:00

My visit to the doctor yesterday was nothing if not interesting. The doc was insistent that I try the mask with forced air again, so I finally gave in and agreed to give it a try. I will be getting a mask and a machine here shortly. I will give it a try but have a hard time believing that I will find it tolerable. The doctor said that I have both central and obstructive apnea which classifies as mixed apnea. She said I had one of the worst cases she has ever seen. Of course, I always try to do everything to its fullest. What’s the point of coming in second? Central apnea occurs when the brain fails to recognize the lack of oxygen; obstructive occurs because the breathing passages close. My heart difficulties are probably causing the central apnea. So, we’ll see if I can tolerate the mask and if I can whether it will do any good. Meanwhile, I got a full, restful nine hours of sleep last night.

Rock-a-bye Baby

2008-03-16T17:01:00.000-07:00

I did the sleep study last night and I would put it in the category of something you don’t want to do unless you really have to. The facility is very nice and I was in a private room with a nice bed and reasonable ambiance. I got there at 7:30 pm and about 8:30 they started wiring me up. I pretty much ended up with wires all over my body. They didn’t hurt or anything but you sure are aware that they are there. Around 10 they came in and I went to bed at which point they connected all of the wires to the computer. I then was supposed to go to sleep. With all of the wires and the unfamiliar surroundings it took me quite a while to get to sleep, but I did sleep some according to the technician. The first part of the test was diagnostic in nature. Sometime during the night the technician woke me up and at that point we were supposed to try this mask that blows air. The idea is that the pressure of the incoming air will keep the air passages open and thus allow you to sleep better. Well I first tried a mask that just forced air into the nose. That didn’t work at all. I couldn’t breathe through my mouth and I felt as if I was going to suffocate. Since I already have some shortness of breath the mask and the incoming air just exacerbated that problem. We then tried a mask that covered the nose and mouth so that I could breathe either through my nose or mouth. That was some better but I still had these breathless and suffocating feelings. I stuck it out as long as I could, thinking I might get used to it, but I finally had to call the technician and abandon that as well. So, I spent the rest of the night in diagnostic mode and slept pretty well. I have an appointment with the doctor on Wednesday and will find out then what the tests revealed. However, if wearing the mask is the solution to sleep apnea then I’m pretty sure I won’t be using that remedy

SO WE WILL WAIT AWHILE

2008-03-13T09:06:00.000-07:00

It appears that we are going to have a week or two lull in activity. The principal objective at the moment is to get my heart rate slowed down and to get my blood thin enough so that it will be safe to do a zap to get the irregular heart beat back to normal. I am taking medicine for both of those things, but it will probably be three weeks before any further action can be taken. On the cancer front I am scheduled for a CT scan on March 25. We won't know anything new until then. I will be having a sleep study this Saturday night so I will let you know about that. It sounds like an interesting procedure. I am still having some problems sleeping so if this makes it possible for me to have a good, full night's sleep I will be most appreciative.

UPDATE

2008-03-09T16:18:00.000-07:00

Nothing much happened on Friday. I was scheduled to go in to get zapped to get the heart rate under control. However, they did a transesophogeal echo cardiogram first and decided that there were indications in my blood that a zap could cause a stroke so the zap was cancelled. So now I am doubling up on amiodarone and have a new medicine, metoprolol, that I am taking in addition to amiodarone. So far no evidence of progress, but it’s early. My heart beat was still 115 this morning. The swelling in my legs and feet is getting under control. I am taking a diuretic twice a day for that and it is working. I am up and around and feeling pretty good. Yesterday I spent most of the day at Pacific Raceways watching grandson Conor race his CRX. The car ran beautifully and Conor’s instructor (this was a school) said he drove well. He was going fast I can assure you of that. Being that active yesterday has caused some fatigue today, but a good nap helped with that

NEW ADVENTURES

2008-03-04T23:04:00.000-08:00

Today was an eventful day. The original plan was to visit a sleep doctor since I have been having difficulty sleeping. I believe I mentioned in a previous post that I will fall asleep and then wake up almost immediately gasping for breath. So, I did visit the sleep doctor who is also a pulmonologist. In fact she was the first doctor I saw back last July and was the one who diagnosed my cancer. Last Wednesday or Thursday I started developing swelling in my feet and legs. That condition got progressively worse so the sleep issue became secondary and the swelling became the urgent condition we discussed most this morning. The doctor scheduled an abdominal and leg scan to determine if blood clots were the cause of the swelling.That took place later in the afternoon and I am happy to report that there are no blood clots. In the meantime the sleep doctor prescribed a sleep study that will take place on March 15. She believes I have sleep apnea, a condition that has gotten progressively worse in the last several months. She says that apnea could be the cause of my rapid heart beat.

I also had an appointment today with my cardiologist. The medicine he prescribed a week and one half ago, amiodarone, has not been working as rapidly as I, or he, would like so he now has me scheduled to go in this Friday to get zapped. He thinks that if we can get the heart rate slowed down and stabilized the medicine can keep it under control. He also prescribed some medicine to take care of the swollen legs and feet. He is not quite sure what is causing that condition but he said he hoped it was heart failure. Colleen and I both blinked on that one, but he explained that he can treat heart failure and that could be caused by the prolonged presence of the high heart rate. He also put on another 48-hour heart monitor to see just how high my heart rate is at present. Last time it averaged 143 over 48 hours. This time we expect it will be somewhere between 110 and 120.

Meanwhile my oncologist was in the loop on all of this throughout the day and he is going to move up my next CT scan. It was scheduled for March 25 but we’ll be doing it sooner than that, as the cancer could be involved in all of these things, particularly the fluid buildup in the legs. We also had blood test done today for a variety of things, but those results had not come back by the end of the day so we don’t know if they revealed anything that might relate to everything that is going on.

BRIEF UPDATE

2008-02-26T11:18:00.001-08:00

I saw the results of my 48-hour heart monitor yesterday and it showed that my average heart rate over that period of time was 143. Slightly higher than recommended wouldn't you say? So, we're waiting for the amiodarone to kick in. The doc says that should happen by the end of the week. We're looking forward to that as all of the attendant problems associated with the condition remain. I also developed a bad cold with a really violent cough, but the doc doesn't want to give me any additional medicines so I will have to tough this one out with tea and honey until it runs its course.

UPDATE

2008-02-23T18:13:00.000-08:00

The results of the 48 hour heart monitor came back late yesterday. I have not seen them, but apparently they showed that my heart is beating irregularly and very fast. So, the doctor prescribed amiodarone which I started taking today. I have to take three 200mg tablets each day. This is supposed to slow down my heart, but I don’t know how long it will be before the medicine takes effect. I am looking forward to it working quickly. I know some of you who read this blog have had similar heart maladies. Have any of you taken this drug?

UPDATE

2008-02-21T13:04:00.000-08:00

Nothing very definitive happened today, but a couple of good things did occur. My lung was drained this morning and that automatically makes me feel better. We got 1.2 liters of fluid which lightens my load a bit. We also had an echo cardiogram and the results showed that my heart is strong and healthy. So no damage has occurred due to my irregular and accelerated heartbeat. We won’t get the results of the heart monitor until tomorrow. At that point we’ll be able to determine the next course of action. As for the lung fluid, that will be sent to pathology to determine if it still carries malignant cells. A test will also be done to determine if the fluid buildup has anything to do with the heart.
At some point we will have to deal with the fluid issue, but we probably won’t do that until all of the test are in and I have my next CT scan on March 25.

UPDATE

2008-02-20T07:51:00.000-08:00

I visited with the cardiologist yesterday in hopes of getting some help with my irregular heartbeat problem. The result of that visit is that I am now wearing a 48-hour heart monitor. If the irregular heartbeat is regular then I may be able to get shocked back into rhythm. If it is irregular (that is if it comes and goes) then we will have to look at medication. I will be going back in tomorrow morning to see the results of the heart monitor and at the same time have another echo cardiogram to make sure nothing else is wrong. I also believe that I am experiencing fluid buildup again so will see about having a lung tap today. My recess from chemo treatment is not going quite as I had hoped, but if we can get the heart situation taken care of I will be feeling pretty close to normal. If the fluid buildup continues it looks as if we will have to deal with that on an ongoing basis.

First One Thing -- Then another

2008-02-11T16:46:00.000-08:00

OK. I think we got some good news today. The CT scan showed that the cancer is stable and there has been very little build up of fluid, so we are going to give it another six weeks to see what happens. We will have another CT scan on March 25. In the meantime we will be dealing with the heart issue that has developed. I continue to have erratic heartbeat from time to time and it seems to be happening more frequently. A typical day I’ll range from 140 pulse rate (sometimes higher) down to 50 (sometimes lower). I don’t have a continuous monitor so these are random readings throughout the day. I can usually tell when something isn’t right and that’s when I’ll take a reading. The biggest problem with this is that when this condition occurs it interrupts my sleep. I go to sleep and in about five minutes wake up gasping for breath. So, I don’t know if this is AFIB, Apnea or something else. In any event, since we won’t be taking chemo it will be a good opportunity to try to get the heart thing under control. I have an appointment with my cardiologist next Tuesday. (I wanted it sooner but he is out of the office). Up to this point he has been reluctant to do anything since the cancer and chemo treatment had priority. Now I should be feeling good which will give me further opportunity to regain strength. The heart rate thing has limited my ability to exercise but I have made some progress. The doc says that when my heart rate is going up and down I should just lay low. As a result I can only exercise on those days when my heart isn’t acting up. All of this is an evolving process so I will keep you informed as things change.

Looking to the Future

2008-02-07T11:38:00.000-08:00

I will be getting another CT scan on Monday, Feb. 11. I misquoted earlier when I said the scan would be on the 13^th. I will be sure to give you a full account of how that turns out and what the future will hold. I have been enjoying the break from treatment. While I am not 100% I have been feeling pretty good, have had a good appetite, have been exercising and in general enjoying life. I still get tired quickly but have been able to do things like cook and bake as long as I don’t stand up too long. Everyone seems to be happy that I am back in front of the stove. Well, Super Tuesday has come and gone and did it really prove anything? Not yet, it would seem, except on the Republican side. I still find it irritating that these primaries carry as much weight as they do. If you look at the numbers very few people are deciding who our candidates should be. However, I do not particularly disagree with the results given the choices available. I think it is a shame that the candidates who in my opinion were the most experienced and best qualified have had to drop out of the race for lack of support. But I shouldn't be surprised as political races have become all about money and who can look the best on television.

UPDATE

2008-01-24T13:43:00.000-08:00

We are almost five weeks past the last treatment and on balance I am feeling much better. However, I still have some stomach and intestinal discomfort. But the shortness of breath has abated and I think the breathlessness I now experience is just the result of being weak and out of shape. I am exercising again which is good, doing some walking and light weight work. So, we’ll just have to see how all of this works out, but at least I am happy to be feeling better. We will be looking forward to the next CT Scan scheduled for Feb. 13, the results of which will determine our future course of action.

UPDATE

2008-01-14T15:55:00.000-08:00

Today’s CT scan showed very little change from the last one. The last three weeks have been very difficult. Given that the goal of this exercise is to prolong life while maintaining an ability to enjoy life, we have decided to take a one month break from treatment, take another CT scan at that time and see if there has been any change. Based on those result we will make additional decisions. We will be doing a fluid tap here in the next few days as there has been some minimal, though noticeable, return of fluid around the lung. So my anticipation is that I should have a month to feel relatively good and hopefully begin to get some of my strength back. The shortness of breath that I have been experiencing has made it impossible to exercise. This break in treatment will also give us a chance to evaluate how much of my discomforts have been attributable to the treatment, and how much is attributable to the cancer or to something else. In an arena where decisions are difficult to make, outcomes are difficult to predict, one to one relationships are difficult to identify, this one month break seems extremely sensible to me. Treatment to date appears to be successful but quality of life has been less than desirable. This evaluation period will we hope help us bring some of this into balance.

On to the Future

2008-01-07T16:02:00.000-08:00

Well now that 200,000 people in middle America, according to the media, have decided who our presidential candidates are going to be, to be followed by maybe 1.5 million more in New Hampshire, who will or won't put their stamp of approval on the winners, I guess the rest of us can just forget about the next 10 months. Unfortunately history is on the side of the media. Wins in Iowa and New Hampshire usually predict the winner. Does this seem ludicrous to anyone but me?

I had blood draw today and will have my next treatment next Monday. The treatment will be preceded by a CT scan so we will get another reading on progress. My side effects haven't changed much. Shortness of breath has been pretty bad yesterday and today, but I am eating a little better. So each day should improve as we get closer to the next treatment.

Football, Football, Football

2008-01-02T14:41:00.000-08:00

I normally don't watch must football, but with nothing much else to do I watched a lot of football the last couple of days. The best game of the day yesterday was Missouri pasting Arkansas. For those of you who don't know I am a Tiger. They made a great statement that they should have been in the BCS. The next best game will be if West Virginia can dismantle Oklahoma this afternoon. Watching Hawaii get beat up and beaten badly was disappointing. I had hoped they would prove they belong in the big time. Nothing much has changed in my physical life. The stomach aches persist as does the lack of appetite. Still have some shortness of breath. My blood pressure is somewhat erratic and I have had some rapid heart beats. But all in all it's not too bad.

UPDATE

2007-12-29T15:12:00.000-08:00

We are now into the sixth full day of our second treatment with Alimta and so far the side effects are pretty much the same as last time Stomach ache, intestinal termoil, lack of appetite, some minor shortness of breath, a pulse that is higher than it usually is, but not alarming. I am taking the stomach medicine that was prescribed, but so far I have not noticed any change. We'll keep you posted.

UPDATE

2007-12-25T10:54:00.000-08:00

Well, we started yesterday with the second round of treatment with the new drug Alimta. I approach this with a certain amount of excitement and a certain amount of dread. The dread comes from hoping that the side effects won’t be as bad as last time. The excitement comes from hoping that we will be able to manage the side effects more effectively this time and thus they won’t be as bad. The other excitement comes from the fact that before the next cycle we will have a CT scan to see if the Alimta is working as well as the previous treatment. We are also going into this cycle a little better prepared in that the doctor has prescribed some medicine that is supposed to provide some relief from the stomach and intestinal discomfort. Unrelated to this treatment we are also taking B6 which has some promise of aiding the Neuropathy (numbness) in my hands and feet. The condition was caused by my previous treatment and is basically nerve damage that typical takes some time to improve. The B6 perhaps will speed up the process of regenerating the nerves. We’ll let you know how all of this works out.

DREAMS

2007-12-22T13:03:00.000-08:00

I have for the most part always liked dreams (the kind you have when you are sleeping). They can be a pleasant interlude in an otherwise turbulent world and on occasion they can even help you solve problems. Of course nightmares sometimes intrude, but even they can be interesting and sometimes serve to let us know how silly it is to worry about some things. Since chemotherapy though the whole dream thing has changed. For one thing it used to always irritate me if I awoke in the middle of a particularly good dream and then on going to sleep was never able to resume the dream. Now, I will keep having the same dream, over and over, regardless of how many times I wake up. I rarely can remember the dreams, but I know they are always about some serious, problem solving, often mathematical situation that makes no sense. For example, in one of my dreams that I do remember my oldest daughter and I were cooking together. We were working our butts off and at one point we decided we finally had enough prepared to feed everyone from here to Prosser. Now Prosser is a town located about 180 miles southeast of Seattle and I would not have any idea how many people there are between here and there, but it would be a big bunch. Every time I went back to sleep that night we were once again slaving away trying to make enough food for the people between here and Prosser. As far as I can recall I don’t have pleasant dreams, only the serious, problem solving kind. I have no idea what all of this means, but I think it is interesting and thought you might think so too. If anyone has any profound explanations let me know.

It's Saturday now and I am feeling pretty good. The shortness of breath has improved and the stomach discomfort has abated. So feeling good just in time for my next treatment which is Monday.

Update

2007-12-19T11:33:00.000-08:00

The irregular heart rate and erratic blood pressure seem to have calmed down so I am left with some shortness of breath, the tummy ache and some intestinal discomfort. Other than that I am feeling pretty good. Some relatively good news. Because of the shortness of breath I thought I might be getting fluid buildup on my lung so I went in yesterday to have that checked. The xray and subsequent ultrasound showed that there is very little fluid build up, not enough to tap. Also, the pathology report on the fluid that was drained about two months ago, showed that the mass of malignate cells in the fluid has been reduced. So taken together with the fact that the CT scans have shown the tumor to be reducing in size this seems to be encouraging news.

A Word About the Link to OncTalk

2007-12-14T17:58:00.000-08:00

If you have scrolled down the left column you will see that I have linked to a blog called OncTalk. The blog is hosted by my doctor, Howard West, director of medical oncology at Swedish Cancer Institute. The blog contains a wide ranging wealth of information about cancer. Some of it is pretty heavy, but most of it is in reasonable lay talk. You may find it of interest as an information source. For example there is quite a bit of information about Alimta, the drug that I have just started taking.

And the Beat Goes On

2007-12-14T11:10:00.000-08:00

Well, heart rate got to be part of the problem day before yesterday. Tuesday night we went to a West Seattle Chamber of Commerce party. Since I am a past president of the organization it seemed like the right thing to do. My cardiologist, however, said it wasn’t very bright. Apparently he was right. That night I had terrible sweats and Wednesday morning woke up with a heart rate of 140 which accelerated to as much as 191 during the day, and my blood pressure was erratic, but mostly low; like 80 over 53. This had happened once before a couple of months ago and without going into a lot of detail everything went back to normal after getting rehydrated with saline and magnesium. So, we tried that approach again yesterday with just saline and I really think it did help some, although I blacked out when I got up from the chair in the treatment center. That prompted a quick trip to my cardiologist. By the time I got to his office I wasn’t feeling light headed any more. I have had echo tests and stress tests and my heart is in pretty good shape so the doctor wasn’t too worried. He felt that I might have picked up something at the party, like a low-grade viral infection and he agreed that I still showed signs of dehydration. So, he sent me home, I drank a quart of broth ( I do love broth) and so far today both blood pressure and heart rate are in the normal ranges. So, I will continue the monitoring and the prolific hydration and we’ll see, but it looks like the worst has passed. We’ll keep you posted.

Update

2007-12-10T11:03:00.000-08:00

It was been a rather uncomfortable week. The side effects of Alimta are not quite what I anticipated. I tire quickly, which I had been warned about, but I have also had more stomach ache and nausea than I expected. It is still with me eight days after treatment so I am hoping there will be light at the end of the tunnel sometime soon. But, we still have much to be thankful for. The storms did not affect us directly. In areas where the floods hit hardest it has been a true disaster. Most of the flooding occurred in Lewis and Pacific Counties around Centralia, Chehalis and Raymond. Our favorite BarBQ joint, about 15 miles west of Olympia, was completed destroyed by flooding and a mudslide. If you ever watch the food channel you might have seen Amy Anderson. She has appeared on many BarBQ shows and has won top honors at all of the national BarBQ contests. So, it is a shame. We are hoping she will be able to rebuild. Of course, the lose of a BarBQ joint is nothing compared to some of the other loses. Dairy farms lost all of their cows, a pig farmer lost all but two of his animals. But people are resilient and with a little help I'm sure things will return to normal.

My Philosophy - This Journey is Just Another Adventure

2007-12-05T09:51:00.000-08:00

I have not availed myself of any of the support groups that are offered by the Swedish Cancer Institute so I don’t have any first hand knowledge of the emotions that others encounter when battling cancer. However, in talking with the oncology nurses and my doctor, depression, self pity and a general malaise are not uncommon. I only mention this because the nurses and my doctor seem to marvel at my positive attitude and happy outlook.

I feel that I have lived a very interesting life. I have had the privilege of walking on the mountains of success but I have also walked in the valleys of defeat and despair. One of my favorite quotes is credited to Theodore Roosevelt. He said, “The credit belongs to the person who is actually in the arena, who strives valiantly…who knows the great enthusiasms, the great devotions, …and expends himself in a worthy cause, who at best knows the triumph of high achievement; and who, at the worst, if he fails…at least fails while daring greatly, so that his place shall never be with those cold and timid souls…who know neither victory nor defeat.”

I can make no claim to greatness, but I believe that striving for things, competing, pursuing a purpose all contribute to a happy life. All of which goes along with my basic philosophy.

I have always felt that happiness is something that is generated internally. You can be happy or unhappy. It’s up to you and it has nothing to do with the external things that are going on around you. Along with that belief I have always felt that when things go bad you have a right to go into a deep blue funk, but that deep blue funk should last about two hours. During that time you can cry, feel sorry for yourself, grieve, whatever, but when the two hours is up get up off your duff and do something about it – that is if it is something you can control. If you have no control over the situation then quit worrying about it and get on with your life. Trust me, with cancer you have little control, all you can do is go with the flow and do what the doctors tell you.

However, I have learned that you can take control of your body as far as its physical strength is concerned and so now I am exercising regularly, lifting weights and walking as often as possible. BTW I have a couple of companion beliefs that go along with my philosophy of life. “never drink when you’re feeling sad”; “never drink to celebrate a major victory.” Bad things nearly always happen when you do either.

Update

2007-12-05T09:26:00.000-08:00

Well it's the second day after my first treatment with the new drug Alimta. I felt pretty good yesterday, with only a little stomach ache, but I'm feeling pretty puny today. We'll see how the day progresses. I plan to exercise regardless of how I feel so we'll see how that goes. So far, though, I think this may be easier than the first treatments. They are not giving me Nulasta (sp?) so at least I don't have the bone pain.

And We Have the New Taken Away

2007-12-03T14:48:00.000-08:00

I went in for my first treatment today with the new drug, Alimta, and also fully expected the begin with the clinical trial of drug of MKC-1. However, I was told that I am not eligible for MKC-1 because the previous treatment was working and the only reason I am going to a Stage Two treatment is that the carboplatin and the Taxol were too toxic and were causing numbness in my hands and feet. The MKC-1 clinical trial is limited to those people who did not improve with their Stage one treatment. Sounds a bit strange to me. I would think that they would want to know if improving patients can gain even more improvement with their new drug. However, I also realize that clinical trials have very specific purposes and they usually only deal with one issue at a time so that the results don't get confused. However, the Alimta is supposed to be very effective on its own so we are hoping that it will be the case and that our improvement will continue. I did have my first treatment with Alimta and so far I feel fine. The side effects usually show up on the second day so I'll let you know how I feel in a day or two.

We've Added Something New

2007-11-30T16:37:00.000-08:00

Well, we have added a new element in our little adventure into the unknown. My doctor called yesterday and asked if I would be willing to participate in a clinical trial with a new drug which has not yet been named, but is identified as MKC-1. This is an experimental drug that has shown some promise in enhancing treatment when paired with Alimta. As with anything else there are some risks, but the potential benefits seem to outweigh the risks. I will be monitored closely (twice a week) during this process and will have blood tests at least twice a week. So, if at any point undesirable results are detected we will stop the treatment with MKC-1. The drug is taken as a pill, twice daily for a period of 14 days. There is a 7 day rest period and then the cycle begins again. The Alimta treatments will be once every three weeks, so the MKC-1 is on the same cycle. The clinical trial is sponsored by EntreMed. You can get information off their web site and there is also information on ClinicalTrials.gov. We'll keep you posted.

We know a little bit more now

2007-11-27T13:32:00.000-08:00

We had our CT scan yesterday and the good news is that the tumor is continuing to be reduced in size. However, we will continue to have treatments for the next two to four months. The drug is going to be changed to something called Alimta. The scientific name is pemetrexed. The carboplatin and the Taxol that I have been getting has caused numbness in my hands and feet and to continue those could lead to a permanent condition which would not be a good outcome. The new drug will have most of the same side effects that I have been experiencing, but it won't include numbness. The doctor seems confident that this new drug will be effective and will probably be a little less burdensome in terms of the side effects. But, as they always say, "everyone is different" so we won't know for sure until we have the first treatment. That, BTW, is scheduled for next Monday. One good thing is that the treatment will only take about an hour as opposed to the six hour days we had previously. So that's it for now.

What's Next?

2007-11-22T15:51:00.002-08:00

We don't know for sure what's next. I go in for a CT scan on Monday and the results of that will determine what we do. We'll either continue the treatment we have been getting, change the treatment or stop treatment. I'm pulling for the third option, but have no unrealistic expectations. I'll let you know what happens Monday.