Dear all,
We have received the results of John's last "staging". It is incredible. Actually, we received them last week, but I was too caught up in the holidays and in my own experience of having those results and of John's vacation from Chemo. The doctor called us the afternoon after John's CT scan because he was so excited. The blood test showed a CA19-9 Pancreatic Tumor marker reading of 34. That is another 75% reduction from 2 months ago. What is more, the range for a normal person is 0-40! The CT scan revealed that all of the seeded tumors are "resolved" (meaning that they are gone). Apparently, the CT scan at the previous staging already revealed this result, but John did not understand what the doctor was saying. Furthermore, the primary tumor has shrunk again. A friend said, "This just proves that John is an Alien." It sure feels like that. First, he gets Pancreatic Cancer, a rare affliction with a lifetime risk of being diagnosed of 1.23%, and a nationwide incidence rate for 35-39 year olds of .9%. Then, he apparently beats the odds (1.6% survival rate for distant metasticies) and gets better. Maybe we should take him to Las Vegas!
However, he has more going for him than these statistics may show. The overall survival rates (for all levels) for people under 45 is 23%. We knew that his youth is an advantage. However, he is not free and clear yet. One-year survival rates are 23.6% while 2-year ones are 8.8%, 3-year 6.6%, 4-year 5.1%, 5-year 3.5%, and so on. We just need to make sure he keeps with the minority. That should not really be a problem for him. It seems to be who he is. Clearly, he is doing something right. He does three treatments consistently, the chemotherapy, the enzymes and supplements, and the prayers of so many. It feels like he would go into remission if he could only just keep doing these treatments indefinitely. Unfortunately, the CT scan revealed chemotherapy-induced damage to other organs as well. I guess this is one of the things that gives Pancreatic Cancer the second lowest survival rate (right after Intrahep bile duct cancer) and makes it the fourth largest cause of cancer death despite its relative rarity.
John has liver cirrhosis (liver damage) and accompanying esophageal varicies (varicose veins - blood flowing the wrong way - at the junction of the esophagus and the stomach), and spleen enlargement. The previous CT scan revealed the varicies, but an endosopy failed to locate them. However, a second CT scan with the same results means that they are likely there and the endosopy just missed them. These symptoms indicate that the cirrhosis may already be quite advanced. Although the liver can function as long as 10% is healthy, it will make everything he consumes more difficult to assimilate. Many cancer patients die of liver failure long before the tumors have a chance to kill them. Furthermore, the varicies may cause "life threatening bleeding" in their own right or set off a cycle leading to liver failure. These symptoms are nothing to sneeze at, although compared with Pancreatic Cancer they are child's play. He also has diverticulosis (small, saclike swellings of the colon). This condition is not dangerous, but can lead to more serious conditions. The most difficult aspect of all of these conditions is their potential to threaten John's ability to take the chemotherapy that has worked so well for him so far, and to threaten his overall ability to fight off the cancer as well as other illnesses. At this point, the cirrhosis seems to cause more symptoms than the cancer.
So, as one might predict, we celebrated for a week, and then set about tackling the new set of problems. I am obsessed with finding out all that I can about these conditions and reviewing his options other than chemotherapy, while John is on the phone to every doctor and advisor who will answer the phone on December 29th. I have that old feeling that I might miss the thing that will save him. It feels like John will live if only we can walk through the landmine field with a map we drew ourselves. I frankly like this mood better than the one I was in most of the previous month. Finally, there is something I can do! Also, I think I had finally stopped repressing my feelings and it all started to come through. As you might imagine, I did not like the things that I felt.
Below is a letter that I could not send when I was in the middle of my own stuff. In retrospect, it does not look any worse than other small-mindedness I have already admitted to living in. However, I suppose I usually send descriptions after I have understood the feelings rather than while I am in the throws of them. You may want to go jump up and down, or cry or whatever you do to celebrate John's numbers and then come back and read about the drama.
Love to all,
and woohoooo!
12/12/03
It is Christmas, and a member of our support group has asked for our family's wish list for her own uses and to send out to others who want to know. I had a hard time responding to this request. I guess I have finally come up against my limits in accepting help. In general, I prefer to give (and therefore control the situation) rather than to receive. Also, I find asking for "wants" instead of "needs" very difficult. (That Puritan blood still flows!) Besides, we are not really "stuff" people anyway. I fear, too, that it will appear as a hint to people who previously saw no connection between us and Christmas. I really don't want to ask for anything that I don't need. Frankly, I don't want to ask for anything at all. At this point, we exist almost completely on charity and while I appreciate it deeply, I also hate it. What I want most for Christmas is power. I want the power to make this illness go away, to provide for my own family, and to make our own choices. I understand that this is childish, unrealistic, and in this context self destructive. I want it nonetheless. Finally, the "stuff" stands in such stark contrast to what we really want and nobody can give us. I understand that people want to give, they want to do something to lighten our circumstance, and I should graciously accept these offers from the heart. I do, in fact, appreciate them, particularly for their intent. I told another friend that I was having trouble with this request and asked for her advice. She said, "The clean thing to do is start a new fad. Make it cool to ask for things, even things that are frivolous and fun. Give us all the freedom to join the fad by setting the example. Be the change we all want to see. We all love to help. It feels so good. We all need to learn how to ask for help, too. Show the way." I am trying. I really am.
You all know what we really want, the thing that nobody can give us. John and William asked for it, while Grace and I had trouble asking for anything (assuming deep down, I'll wager, that we will never get what we really want). John has had a rough couple of weeks. He felt more side effects from the chemotherapy and the bone marrow growth factors than ever before, and they all lasted longer. Also, he experiences more abdominal pain than he has in months. This really worries both of us because we fear the cancer is progressing. They will do another "staging" soon and then we will have numbers to confirm or deny our fears. However, even if the numbers continue to look good, what difference do they make if his experience is dismal? He sits in his room and cries much of the time that he is not sleeping. (I too find myself crying in little snatches when no kids are around. ) Keeping one's spirits up becomes more difficult in a context where his bad days outnumber his good ones four to one. One looses sight of the larger successes in the struggles of daily life.
I have become increasingly worried about our financial situation, and the idea of not being able to give Christmas presents. Some of this is real, and some of it misplaced anxiety. I have yet to discover the divide between these two. In response to my fears, I have been looking for a job that I could do without greatly detracting from my efforts to care for John and the kids. I also tried to have another yard sale. It was a complete fiasco. After a long string of setbacks, the sale ended with a rain (in the middle of a drought) that lasted only long enough to soak everything before I could drag it inside. As I stood cold, wet and alone, trying to struggle against the inevitability of overwhelming failure, I began to think that I was cursed. When the rain stopped soon after we had everything away (as if meant only for me), the possibility that there was some message in it seemed very real. Everyone has these little struggles in life, the times when one thinks, "I am clearly doing something wrong." Somehow, when dealing with a terminal illness, however, these little challenges take on Biblical proportions. The story of Job kept coming up for me. In the process of presiding over such a disaster, however, I learned that I have really accomplished more in this crisis by accepting and appreciating what comes to us rather than from any effort I put forth. I guess I am a slow learner, but it is difficult to give up the fantasy of control. I had even come to believe that we get so much support because I asked for it. However, I have had trouble asking for help lately, but the support continues to come. After I relaxed into my defeat, I received several completely unsolicited gestures of support. Then, like the decorations on a giant wedding cake, (way past the icing) came the request for a Christmas wish list. It stood in stark contrast to the above-mentioned experience as a do-er. Even slow learners can not ignore the obvious choices 1) work until you are frustrated and exhausted and your family thoroughly neglected for no gain whatsoever, or 2) take a deep breath, appreciate what life has provided, and receive untold wealth (the land of milk and honey).
In this context, I received people's support. It came primarily in their responses, as if I was crazy to think that I needed to make these efforts. "Relax," they said, "you will be taken care of." And finally, the ultimate extension of this message, "What do you want for Christmas?" Wait a minute. I thought I was in a struggle for my very existence, and here I come to find out that I get my needs met and get to have desires as well. It is funny how easily we can get caught up in our own fears and loose sight of what we have. We live very well really. By global standards, we live extravagantly. (It would still take two planets to sustain the whole world's population at our family's level.) Most importantly, fear blinds us from the love that this world holds. I have just received the best Christmas present I have ever gotten in these simple words from people who love me, and I can not stop crying at how beautiful it is.
Now that I am through with my little drama, I have begun once more to see the real suffering in the world and people's efforts to mitigate it all around me. Even homebound as I am with Chicken Pox and Cancer, the newspaper offers glimpses into a world deeper and more difficult than my own and how it looks in the days before Christmas. In the paper today, there was a several-page article about the lives of people on Skid row, and a man who goes there every year to give out $10 bills at Christmas (and $1 bills every day the rest of the year). I also read a very poignant article about the volunteers at the Post Office who try to answer letters to Santa written by the truly needy (the one's asking for blankets, etc. for Christmas). I felt both compassion for their plight and a small amount of identification. In years past, I have had mixed feelings about Christmas. I loved the "bringer of Light" theme and the "Christmas Spirit", but like most of you, I hated the consumerism. I guess now I am blinded by the light (so to speak) and hardly even notice the consumerism, even as I write my list of "stuff". Perhaps, this is simply more of life taking on Biblical proportions these days.
OK, so here is our wish list:
John wants a cure for cancer, more time with me, and a digital camera.
William identified three things that would "make his life perfect", a trampoline, a game system (I can't remember what they are called) and a cure for dad's cancer. (Somebody gave us a trampoline that same week!) He also listed a new video card for our PC so that it can play his new games, a Harry Potter game for the PC, the Sims Hot Date Expansion Pack, Yu-gi-oh cards, Star Wars Legos, new shoes (Vans and Ugg boots), and a 13", 18 gear-mountain bike. He also wants to go to the grocery store and pick out food, so I guess that means a gift certificate. (It is great to have people giving us food, but he misses going to the store and picking things out.) I would like a computer typing tutor for him, and some kind of program that allows him to learn computer programming.
Grace said she would really rather be surprised, but that she does like Harry Potter action figures and wants Ugg boots. I would add that she really likes pretty dresses to wear to Sunday School.
Lacy does not really understand the question, and he has more stuff than we can really store. I would like new diaper covers and kids' music for him.
For myself, I would like to rent the Ojai Trolley and bring a great load of people Christmas Caroling. I would also like some new clothes, or a gift certificate to Sierra Trading Post or Lands End or some other on-line clothing outlet. Also my purse broke, so I could use a new one. (Maybe somebody could give me the opportunity to run for days and not look back as a Christmas gift. They could put the bow on my head.)
We have all really enjoyed gift certificates to restaurants. We make a real occasion out of them.
Peace and love to all!
Merry Christmas