"Why Me?"

From the time I was diagnosed with cancer, not once in that context have I thought, "Why me?" Shortly after being diagnosed, I can remember thinking, "Well, why not me?" Particularly in recent years, I had tried to be careful about diet, exercise, and check-ups. So what? All that healthy living can do is improve the odds. Anyone can get cancer. 

But I must admit that when I think about my medical oncologist's estimate that someone with my cancer diagnosis who underwent the surgeries and chemotherapy slated for me should have about a 20 percent chance of being cured, I cannot help thinking, "Why me?" Why should I be the one out of five who makes it?

Missy Jones

My cousin, Melissa Ellen "Missy" Jones, died at age 61 on September 5 in Virginia Beach. Although she had not been well, her passing was still a shock. Tragically, both of her siblings, Patsy and Cynthia, had died of unrelated causes as young adults, early in their married lives. Missy was the middle child and was unmarried. She left behind her nephew, Mundy Hackett, Patsy's son, a wildlife biologist and a good man; and her mother, Lucy, my mother's youngest sister and as fine a person as I have ever known. While I can only wonder at Lucy's emotional balance, wisdom that enables her to find the good in life, strength of character, consideration of others, complete lack of self centeredness, delightful personality, and general good nature, she exemplifies these virtues and more in the eyes of all who know her.

I have always felt particularly close to the Jones branch of my family, and it was hard for me to accept that I was too ill to travel to Virginia Beach for Missy's Episcopal Church funeral service. No matter how difficult the circumstance, Missy had always made me feel especially welcome. My brother, Bill, was able to attend. Lucy sent me the program from the service. The closing prayer reads:

                                  O Lord, support us all the day long until

                                    the shadows lengthen and the evening

                                    comes, and the busy world is hushed,

                                  and the fever of life is over and our work

                                     is done. Then in Thy mercy grant us a 

                                     safe lodging and a Holy Rest and peace

                                  at the last through Jesus Christ our Lord,

                                                                 Amen.

                                                         In Memoriam

                                                    3/15/48  --  9/5/09

Out of a Miasma

Except for one posting on August 12, I have not been posting on this blog since August 1.  From the time of my second surgery on August 3, until a few days ago, I have been on narcotic painkillers and haven't trusted my brain. Also, I haven't been able to sit without pain for long enough to type out a blog entry. Most important, as I have not been able to do much and have just started once again to see friends, there has been very little interesting in my life to report. 

I feel as if I am crawling out of a miasma of pain, drugs, and hospital admissions and readmissions to deal with, among other complications of the second surgery, an infection in the body cavity, a separate infection 0f the incision, and 35 pounds of edema in the lower body. Supposedly, there is about a four percent chance at MSK of getting an infection from one of the surgeries I underwent; I have heard no theories on why I got three infections from my two surgeries. 

So far, since the second surgery, I have almost no appetite; most food does not taste to me as it always has, and the new tastes are unappealing. I am now allowed to drink wine, and I enjoyed a glass of rose; but I couldn't drink the other two wines, a Champagne and a California cabernet, that I tasted. (I have been told and fervently hope that, in time, food and drink will regain their tastes and appeal.) I can sleep only for about an hour without awakening in discomfort. 

I recall that Vince Lombardi was quoted to the effect that fatigue makes cowards of us all. He certainly would have been right in my case. After a few weeks, it was hard to think of the big picture that led me down this path, that there is a chance of cure from undergoing these surgeries and the chemotherapy to follow. I just wanted the pain and the unremitting feeling of sickness to stop.

Ideally, the medical oncologist would like for me to be resuming chemotherapy about now. However, he said when he saw me six days ago that I had to gain weight by eating as much high-calorie food  as possible, as well as to gain strength through exercise, before they could start the chemotherapy-- otherwise, a single dose might kill me. I weighed 161 pounds that day. This morning, I weighed 155, as a result of digestive tract problems that caused MSK to send me to its emergency room for most of the day. So far, the tests do not reveal any medical problem to be treated.

The best news on the medical front is that I have been freed to exercise again. I have started physical therapy, and I have reactivated my gym membership. I cannot do much, and I get very tired, but it feels great to be moving again and to observe some faint signs of rehabilitation. If you recall the model, Twiggy, from the 1960s, she was robust by comparison with me. So I have lots of room for recovery. 

Even better news is that I am feeling up to seeing friends again, if only for short visits at this point. I hope to see you soon. With this update having been posted, we can talk about things other than my health when we get together. I think of the current period as a brief window, as there is no way of knowing how sick the chemotherapy will make me.

Doctor Appointments

Yesterday, Charlie had a follow-up visit with the surgeon, Dr. Jarnagin (I was playing golf), and later in the day, I joined him for a meeting with the oncologist, Dr. Saltz. Both doctors believe Charlie needs more time to gain his strength before starting chemotherapy again. He will be reevaluated in two weeks with a probable start date for the chemo at the beginning of October.

In the meantime, his instructions from Dr. Saltz are to eat a calorie-laden diet of high-fat foods (nutrition be damned) and to do his best to get an hour of aerobic exercise a day. Given his poor appetite, it is not clear which assignment will be more difficult. I have visions of the two of us appearing for the appointment in two weeks with me the one who has gained ten pounds!

Charlie is facing the upcoming chemotherapy with apprehension. Dr. Saltz said the regimen will be changed to the one known as Folfox from the Folfiri he had before the surgeries. A different set of frequent side effects is worrisome, especially that Folfox often causes numbness of the fingers, and Charlie already suffers from Reynaud's syndrome, which has similar symptoms.

Out To Dinner

Not everyone has been sure that "no news is good news," so I thought I would make a brief post to say that there has been some progress--a little more strength, a little less pain, and a lot less bloat. Charlie's weight is back to what it was before the surgery, although he has clearly lost weight and is still carrying excess fluid, primarily in his feet. Tonight we will see if the Italian restaurant Raffaele, on First Avenue near 57th Street, can fatten him up a bit. It will be the first time we have been out since the beginning of August.

Home Again

Charlie came home today weighing twenty-two pounds less than when he entered the hospital a week ago. He is out right now enjoying a walk in the lovely weather here in New York, and we walked home from the hospital in the early afternoon when he was discharged. What I think he needs most right now is good food and lots of sleep. I will make every effort to see that he gets both.

One Month Anniversary

Tomorrow will be the one-month anniversary of the second liver resection surgery. Although it has been a very difficult month, and we did not expect that Charlie would mark that anniversary as an inpatient at MSK, I feel like we are now in the home stretch.

The most important things are that all known cancer has been removed from his body and the liver is regenerating. The infections have been cleared up, and the excess water is coming off. His weight is about nineteen pounds lower than when he entered the hospital last Friday.

It appears that Charlie does not process the oral version of Lasix--there was virtually no progress when he was switched over from the intravenous version, and he has now been switched back. That is the main reason he is still in the hospital.

Having provided the rosy picture above, it is important for me to report also that he faces probably four months of chemotherapy in an attempt to kill lingering, undetectable cancer cells, and that will be difficult. Also, he is still not completely comfortable, and that has affected his sleep for weeks. He is very exhausted.