Dealing With Death

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In a previous entry I detailed some of the restrictions that cancer has caused.  Here I would like to deal with the daily life of dealing with death.  I will get to the most difficult part first. In October my oncologist suggested that I had a year to live. He was reluctant to be that specific but I was pretty sick and wanted to know what I had to prepare for.  A statement like that was a shock, though not as much as I had thought it might be.  It was a bombshell to my family. I worked to manage their emotions more than I did mine. The children were upset. The two children with young families had to prepare their children for the eventuality that I would be very sick and die.  My brothers and wives were worried. During October and November all of them visited. We had wonderful times—laughing, remembering, discussing what this meant.  It all was very pleasant.  The chemo’s effectiveness has for now taken a lot of the emotional fear away and things are much more normal for now.  It is surprising how the discussions at home have a way of showing up here.  Over Christmas my grandson was very blunt—Was the cancer still inside me? How did the medicine get into me?  He is 6. We had a short but clear discussion as I answered his questions. At my last chemo session I had a picture taken showing the medicine bottle hanging above me and the needle going into my vein so he could see how the drip procedure worked. 

The news of my demise did not frighten me.  I have had 8 years to come to terms with this cancer. I have been fortunate to have had all those years.  My Gleason score was 9. Many victims who have that score do not live this long. I am not sure why I am not afraid but I am not.  One of my daughters asked me about this and I compared myself to one friend whose wife had a heart attack after no apparent symptoms and was gone in an afternoon. I also mentioned a young couple who were pregnant for the first time. The baby suddenly was born at 24 weeks, living only two hours.  Another young couple lost their 20-year old son to what was something akin to sudden infant death syndrome.  Compared to those three heartbreaks and the trauma of them, my news is much easier to deal with.  I even have a good bit of my funeral service worked out.

But I have to tell you that I don’t dwell on death. I dwell on today.  I have things to do. I don’t spend a lot of time on what I have to get done before I die. My affairs are in order. I spend time on joy and satisfaction and communities I belong to.  I lead a photography club, I rock climb, I had led a campaign to erect a sign for a significant historical site near our home.  I recently led a Strategic Planning session, the first one I have ever led. I post every day an “early morning” photograph of some feature within several miles of our house.  I do my best to just accept the limitations that come my way.  Years ago on a plane ticket packet an travel agency had written “The experienced traveller accepts all difficulties calmly.”  I have taken that sentiment to heart.

Cancer gives strange gifts. One of them is the discovery of resilience in yourself. I can do this. I can manage this. I am not put down by this. I will go on.  It is a wonderful feeling to be free of fear. It reminds me of the same sentiment as expressed by Ernest Hemingway in his story “The short happy life of Francis Macomber.”  Another is the outpouring of support, from friends and family all over the U.S. and from various places around the world. I send out an email after my sessions with the oncologist. (These sessions are the only ones fraught with tension:  I have the lab PSA test in the morning. See him in the afternoon. We read the result together. My heart is in my throat as we turn to that number. Will it be up or down?  My blood pressure is always 20 points higher before these meetings.)  Over the years the list has grown mightily from just my immediate family to friends, nieces, nephews, even grandchildren of my brothers. And I hear back from them.  Those messages are so important.  Just a few words of happy cheer if the numbers are down or messages to keep on fighting.  I love them.  One of  my nieces sent me one written entirely in emoticons.  If I can figure out how to get it into this entry, I will. It was so creative.

In spite of my comments about not being afraid and being able to manage the news, I discovered over the Christmas holiday that something else has been at work.  During the holiday all the family was here including the sister of a daughter-in-law and her child. For Christmas dinner we had 18 people. During this time I talked, laughed, danced, sang, took kids sledding and immersed myself in the love in the air.  After they all left I felt strangely light. I had expected to be depressed as the house returned to the quiet of 70-year olds moving around.  But instead I felt liberated.  I explained to my wife that it felt like the cancer had caused a sludge to settle in me. The worries. The restrictions. The repetitions. I had often been irritable during the time after each chemo session. The onslaught of love and activity swept all that sludge away.  It is gone. God, it feels good. My step has more spring. I don’t expect some limitation to happen. Instead I am ready to go forward.  I have put off writing these blog entries for weeks. Now here they are.

Will I be dead in a year?  I don’t know. I hope I have explained myself. I don’t dwell on it. For a while I dwelt on the effect that it would have on say grandchildren. That was too emotional. I quit that.  Then my four-year old granddaughter’s great grandmother on the other side died.  She told me that what happened when you died was that they took you to the cemetery.  That was that. 

If I worry about anyone it is Mary who carries more of the burden of daily life here. Actually I am learning a whole lot more about things around the house that I have let her take care of.  I just can’t sit around and watch her work.  It feels good to get into the household routine. But I try to ease her concerns and worry, mostly by listening when they surface as they periodically do. As with me she needs some changes that make her life easier. We have purchased new furniture for her office, dramatically upgraded our music system, changed some of the way we do laundry. Little things I know, but each of us must deal with the daily and long range concerns of terminal cancer.  What can I say? She has thrown herself into a dietary routine that should help both of us. We work out together. We talk and laugh, always laugh. How lucky I am.

Chemo 2015

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I began  chemo on October 8, 2015. On that day I received a quick overview of chemo which consisted of a discussion of foods, side effects, and possible dangers. We had so much information so quickly that I was glad to have all the handouts. My wife has taken the food changes to heart and our diet has changed to something close to the Mediterranean diet, lots of vegetables and fruits, more fish, less sugar and red meat. I have also ended my wine consumption because of possible liver complications from the chemo drug and my coffee consumption which I began when my stomach was in an uproar and peppermint tea was one drink that helped settle the stomach.

The sessions last about 2 and a half hours. First they take a blood sample to determine whether my white blood count and platelet count are in the normal range so that I can undergo receiving the docetaxel (Taxotere).  I receive a dose of anti-nausea medication, a steroid (dexamethasone) and then the Taxotere which seeps into me for an hour.

The side effects have not been bad.  On the first night after the appointment, due to the dexamethasone, I experience a “wired” effect that often keeps me awake till 1 or 2 in the morning. But that only lasts one or two nights.  For the first 4-6 days after the sessions I have constipation issues.  I tried a number of laxatives with moderate success then hit on Miralax which works the best, but even it can take a few days to become effective. Another immediate effect that quickly recedes is red skin especially on my face.  I look like St. Nick for a few days but it disappears without my having to do anything about it. After the 4th session I had sore fingernails for two weeks. It felt like I had hang nails on each finger.  That appears to be over but several of them especially my thumbs now have mounds along the sides as if a force pushed them up away from the skin. I have wondered whether I will lose some of those nails. I have had dry skin on my hands, arms and face. After trying a number of lotions, I have settled on Bag Balm, a thick paste that works very well. After the first two sessions I had “chemo burn” in the veins where the needles were inserted.  I could distinctly make out the extent of the burn. I applied hot compacts for about 20 minutes several times a day for a week.  I guess the veins have toughed up. The last three sessions have not resulted in those burns. For the first two weeks after I often have tired legs, especially thighs after walking or working out. I also have to be careful of being with sick people. During the Christmas holidays I had to cancel three family engagements because kids either had sore throats or a vomiting sickness.

During this time, as I have for the past three years, I work out as regularly as I can.  We try for three times a week in the weight room though often it is just two. Some days I feel great during and after and others not so great.  I also rock climb once a week at our local college’s climbing wall.  As with the weight room, some days are great and I skim up the wall on routes I have not mastered and other days I can’t make it up easy ones that I have done before. I feel that regular workouts have given my body, and my mind, more strength to deal with the vicissitudes of cancer.

A major effect of chemo is the three-week schedule.  Because of that we don’t plan ahead.  We had a busy Christmas schedule which was lots of fun and that I will return to in my next post, but an impulsive trips or any “well maybe next week” trips are out.  I have gotten caught up on a lot of little projects around the house. We had planned numerous area trips for the fall color season but those all were abandoned. We had a trip planned to New York for January but that has been cancelled because of the closeness of all those people on an airplane.  It is just too much of a chance. However, we will travel to my 50th college reunion in February in Texas.  I really want to attend that and I guess I will wear a mask on the plane.

2015 A Roller Coaster Year

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2015 was a roller coaster year for me and my cancer. In July 2014 my PSA began a slow rise that eventually crested at 330 in September 2015. During that time I switched from a urologist to an oncologist who prescribed me through the preferred sequence of drugs.  All of them temporarily reduced my PSA, then failed as the PSA returned at a higher level.  The last two cost $9000 a month. Thanks for insurance. Now I am on chemotherapy which I started in October 2015. The chemo is docetaxel (Taxotere), the “gold standard,” as a doctor at Mayo in Rochester, Minnesota characterized it to me.

During the year my wife and I had to work hard to deal with the fluctuations of the PSA. We learned to be dubious about the first reduction in PSA caused by any medication. More on this aspect of our life in another post. Suspecting that the regular failure of medications would lead to chemo and the restrictions it causes, I chose to use the spring and summer to travel. My brothers and I drove the length of the Mississippi River in May, my wife, two daughters, oldest granddaughter and I visited Denmark in July and we spent August in Seattle with our son and his family.

During these trips I noticed a pressure in my groin often extending down the right side of my penis and another pressure in my right thigh that dulled my sensitivity to touch.  Two different doctors were unsure of the causes of these discomforts though I know have a theory that I will explain later. We returned from Seattle in early September. By mid-September the events that led to me being on chemo began.

One evening, September 18, I had a violent vomiting episode and three days later another. As it happened I saw my oncologist a few days after these episodes and he ordered a CT scan.  That scan revealed that I had “innumerable” small tumors along my peritoneal wall and a large amount of liquid, called Ascites, in my peritoneal cavity. No action was taken at the time but for the next week I was extremely uncomfortable with constipation, stomach pain, lack of appetite. Finally the oncologist recommended that I have the ascites drained. That event happened on October 1. They drained 5.5 liters of ascites. The next morning I weighed 12 pounds less, 184. I continued to lose weight down to 173, though have since regained poundage up to 180 which is where I would like to stay. I began chemo on October 8, a Thursday and have continued it every three weeks since.  I had my fifth this week and have probably about three more. The end date is not clear. I will discuss chemo in the next post.

When the ascites was cleared and the tumors in the peritoneal wall identified, the oncologist suggested that I should have doctors at Mayo in Rochester look at them to determine whether anything should or could be done. So we went twice to the Mayo Clinic a very impressive campus connected by both skyways and a pedestrian subway.  While the campus was pretty neat, the surrounding neighborhood was not. I wonder if it is difficult to keep doctors in the area.  The first time was an entire day of appointments with various technicians to get blood and pictures of all my insides, finished by a long meeting with one of the top prostate cancer doctors. He said that having prostate cancer on the peritoneal wall was very unusual. He wondered whether it was actually cancer of one of the other organs within the peritoneal cavity. He scheduled a biopsy for the area which occurred the next week. I have detailed this visit in in an earlier post.

That biopsy proved that the tumors were prostate cancer and he assured me that the chemo treatment I was receiving was exactly the correct thing to do (which occasioned one of my nephews to wish that someone said that of something he was doing). As the PSA has gone down, I have wondered whether the tumors and the ascites buildup they caused were the cause of a number of the discomforts I had before the ascites was drained (the peritoneal wall secretes ascites which lubricates all the organs in the cavity and also absorbs it so that the amount in the cavity remains constant. The tumors blocked the absorption, hence the large puddle of it that collected in me. One friend was glad to hear that the ascites was gone. She though I was developing quite a pot, which I was, and she was glad to hear it was gone. Cancer gives strange gifts.) One aside. As the ascites grew so did the PSA number. However, the issue that initially caused me to be referred to the oncologist, a tumor on my iliac crest, had not grown at all during the year and a half that it has been present and no other tumors have developed in the bones, the usual place for prostate cancer to metastasize. Who knows?  I am just grateful.

With the ascites gone, the numbness in my thigh and the pressure in the groin have gone. In addition the blood in my urine has disappeared and with management from Miralax I have my constipation under control.

November 4, 2015 A Trip to Mayo

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November 5, 2015

A Trip to Mayo in Rochester

The short version of this report is that my PSA is 79, down from 110 a week ago. The doctors are happy that the number continues to decrease. In addition the blood analysis shows that all my categories are normal. This is a good sign. It indicates that my body is responding well to the chemo treatment.  I have had a lump next to my navel which has been the source of some disagreement. Several doctors think it is scar tissue from my prostatectomy in 2008; others think it is a tumor.  In order to clarify the situation, we will return to Mayo on Thursday November 12 so that they can biopsy the lump on November 13. More on that when the report comes in.

It was a long tiring, satisfactory day at Mayo. We drove down on Monday November 2, spent all of the 3rd running around the complex and came home on November 4.

On the 2nd I was checked in for the day at 8:10 am.  I had previously sent them a very complete record of my medical history and had had the various doctors involved in my cancer treatment send all their reports and all the slides and images that they had.

At  8:30 I received a shot of something that made my bones show up for the bone scan.  At 10 blood was drawn as reported above.  At 10:15 we went to an optional nutrition for cancer class.  We were the only attendees to the dietitian scrubbed her presentation and we talked about my condition and what foods I should be taking. We had already moved to the kind of diet they recommend (basically the Mediterranean diet). We wondered whether any foods could affect white blood cell count, since one of the dangers during chemo is that that count goes low and while low the danger of infection-and the inability to fight infection is lessened. The answer was no, no food affects white blood cell count. I am low in hemoglobin and calcium so we reviewed foods that would increase those counts.

At 11:30 I had the bone scan. It lasted 25 minutes. Then the doctor in attendance wanted a more detailed scan of my pelvic area. After waiting 25 minutes for the appropriate machine to be available, I had that round of images, taking about 30 more minutes.

By this time it was past 1, so we went to eat in a cafeteria.  At 2:30 we began the meeting with the doctors, two of them, a resident who was in oncology this week and an expert who has been at Mayo for 30 years.  The resident, who I thought at first was the president of the local high school senior class, went over the blood work, explaining each of the numbers.  As I said all are in the normal range except calcium and hemoglobin which are just below normal. We asked a number of questions. She answered what she could and took the others to ask the expert. One of the key things she told us was that Texotere, the drug they are using for my chemo, is the gold standard of prostate chemo treatment..

A bit later the expert came, Dr. Quevedo. The first thing he asked me was whether Riordan was Spanish.  I said it could be because a number of Irishmen had fled to Spain after the various wars that the Catholics lost to the English.

His main concern was that the tumors have appeared on my peritoneal wall. This location is highly unusual for metastatic prostate cancer. As a result, after some explaining and reviewing of images, he scheduled a biopsy of the lump near my navel.  We will return to Mayo on November 12 and have the requisite blood draw (at 8) and the biopsy at 10 on November 13.  He wants to rule out that it could be some other cancer causing the tumors on the peritoneal wall. To arrange the biopsy he called around until he found a world renowned expert would do it and then he just scheduled me in.  It was pretty amazing considering the hassle one sometimes goes through to get an appointment with a specialist.

He also addressed the lesion, or tumor, on my iliac crest, one of the hip bones.  The resident had suggested that they could radiate it, but the expert said no. It’s position on the bone made that impossible. He praised my oncologist here in Menomonie for doing a good job with my condition.  Lastly they told me that successful chemo would lengthen my life span by several years, which was certainly good news.

I have hit the highlights here.  The review was thorough. We left at 5:30 feeling very good about the day and our treatment throughout the day. We planned to drive home that night, but once we were out of the office the tension of the day caught up with us.  It was all we could do to walk to a nearby restaurant, eat, and come back. I think I was asleep at 8:30.

For those that live in the Menomonie area, here is a note on driving to Rochester. We went down on a beautiful day following Hwys 25 and 35 to Wabasha. There we took Hwy 60 to Zumbro Falls and then 63 into Rochester.  Hwy 60 is a fabulous scenic curvy road.  It was fun to drive.  That route took us two hours. Coming home we came back through Plainview and Kellogg, up to Wabasha and on to Menomonie, a route that took a little over 90 minutes.  It is more rural and less scenic but we moved right along.

Second chemo session

-Second Chemo Session

Thursday, October 29, 2015

Today I had my second chemo. I have accompanied this entry with photos that include needles inserted into me. Just so you are prepared. Two drugs, Aloxi and Pepcid, are “pushed” into me.  The saline, dexamethasone and texotere flow from bags hung on a stand at my side. This stand has wheels so I can take it to the restroom should I need that. Also the IV department provides comfy recliners for me for the two hours I sit there.

We left home about 9:45 for a 10 am appointment at Mayo Clinic Health System-Red Cedar. After a few preliminaries of registering and checking my vitals, the actual session began at 10:15.  First the needle was inserted into a vein on my left hand. I had had a bit of redness last time with the needle at my right elbow. If a problem develops, it will be easier to care for on the hand.  You can see the arrangement in the photo below.

Then in succession came a few minutes of saline solution followed by 20 mg of dexamethasone, a steroid.  The dex started into me at 10:15 and flowed until 10:30.  After an 8-minute preparation, the next drug, an anti-nausea medication, Aloxi, .25 mg, flowed in, and then 20 mg of Pepcid, another stomach calmer.  The last two drugs took 7 minutes to enter me.  At 10:43 the 150 mg of Taxotere began to flow.  At 11:58 the bag was empty. After a Lupron shot, something I receive every 4 months, we left for home about 12:10.

Every drug is scanned before it is set up to flow into me. Also, before the Texotere is hooked up to me, two people have to read the labels and confirm that it is Texotere and it is meant for me. I have a picture of the scanner below also. 

The session takes place in a normal sized consultation room. Everyone is attentive, very professional, yet willing to carry on conversations about whatever topic arises. Today we discussed Dexter cattle, an Irish breed, for a bit.  I read most of the time. My current book is Our Daily Bread, a socioeconomic history of Germany from 1500-1850. I have amassed a large amount of data on my ggg grandfather Jacob Reiser and I have decided to turn all that material into some kind of small book. Our Daily Bread is part of my research.

I type this at 1:30 pm after lunch.  I feel fine and will go for a walk of about 2 miles shortly.  I don’t know how I will feel tomorrow so I want to get the walk in today.  Last time I really felt ok except for tiredness and constipation issues.  I am not sure that those issues were caused by the chemo; they had been present for several weeks prior as I worked through the ascites problems in my abdominal cavity.

I have been thinking about an entry on my emotional state as my cancer has taken the turn that it has, but I will wait a bit before I write that. The short version is that I am blessed with a makeup that allows me to say truly that I am not worried and not afraid. But there is more to that and I would like to explain it.

The lead up to chemotherapy

My cancer after eight years became aggressive on September 18. I had a vomiting attack which I initially attributed to a virus; however I had another one on September 22. That same day I went to see my oncologist.  The PSA drawn that day indicated that Zytiga had failed. He started me on Xtandi. In addition I complained about my back hurting; he decided I should have a CT scan. That scan showed that I had an abnormal amount of  ascites fluid in my abdominal cavity. We decided to have the cavity drained which happened a few days later on October 1. They removed 5.5 liters of fluid from my cavity.  That process is pretty interesting. I was awake through all of it and talked to the doctor and the nurse. At one point near the end they actually tipped me over so all the fluid would run down toward the  tap needle. In addition the sudden increase of ascites caused the doctor to suggest I stop  Xtandi and begin chemotherapy as soon as possible which I did on October 8. I will have the therapy, which takes about 90 minutes, every three weeks.  They are not sure how many sessions I will need.

 The only side effect I am having is a constipation diarrhea problem. I believe I will have this straightened around in the next day or two. What I will say is that MiraLAX really works on constipation.

The other thing that happened is that my  doctor thinks that I have about a year to live. I have announced this to my family and friends and of course they have found that hard. I have known for some time that this day would come and I am actually more prepared for it than I thought. I do not expect, however, to sit around and wait to die. I have many curiosities and enjoyments and I intend to do them until I am physically or mentally no longer able. I will comment more on the emotional side of this in future posts.

One last thing -- I will go to Rochester clinic for a thorough examination of my case in early November. They have asked for a complete set of records including slides and images back to 2007. I think a lot of us are waiting to see the results of all the tests there. One thing I have not liked is that I have had to cancel some of the speeches that I had been asked to give. But so it goes.

Beginning Chemo

 On October 8, 2015 I begin chemotherapy for my prostate cancer. The drug being uses Taxotere apparently the usual drug to use in this situation. Since the first treatment I have not had so far any of the usual side effects such as hair loss or metallic taste but I am having ongoing problems with my lower G.I. system. I will detail of these in later blog.