Falling in love with cancer

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I had an amazing experience awhile back.  Jimmy Carter announced that he was now cancer free.  His doctors had employed therapy that used his immune system to fight and eradicate the cancer.  My wife said that that would be great for me.  My reaction was “I’m not sure.” What? Sweet Jesus!  I could hardly believe my ears but I could feel the truth of the sentiment inside me. 

I had converted to liking being a cancer victim.  I have made my peace with dying.  I have a life right now that is dominated by cancer such that whatever I do is sort of an in-your-eye cancer decision.  I have a support system of people who want to hear, regularly, how things are going with me.  When things are bad, I get support;when they are good, I get support. Now that I am on chemo, people greet me and ask how I am doing; they do the same when they run into Mary in the store or around town.  But it is not just the external people, it is internal to me.  This life is in its own constricted way very satisfying.  If it were gone, I would have to do some serious adapting. It reminds me a bit of being in the zone, like when I have written a book and that is all I can do for months, all else is marginal.  Or like travelling where the journey is actually the most fun and the destination is sometimes not all that easy to get into sync with after the adventure of the journey.

Can you believe this? During November my brothers led a healing ceremony for me.  My oldest brother read the words and all the people who were there put their hands on me.  The first line he read was “May you desire to be healed.”  And later “May you keep hope in your heart.”  I found in that minute that I was not sure that I did desire to be healed. I  have lived through so many failed attempts just to restrain not even cure the disease, that I found I had slipped into a kind of position in which I saw myself as one who endures.  And of course enduring is actually sort of fun.

I had no idea when I first heard those words that I felt that way.  Now I know.  It is now another thing that I must fight.  And I have begun to do so.  As with many of the issues in dealing with cancer, the most important part of the battle is conceptualizing the problem. And now, of course I have hope and desire to be healed.  I tell you this so that if this infliction falls on you, or if some other one puts you in a similar position, you know that the insidiousness of falling in love with the oppressor is there, it probably will happen to you, and you have to do something about it.

January 16, 2016

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.