2006-11-28 J-tube is out!
It is truly interesting that exactly two months after the surgery I started having a serious infection with J-tube. Suddenly the foul smelling pus started oozing out of the insertion site, soiling my clothes.
Is it Murphy’s low or what? Medical emergencies always happen over the weekend. The doctor on call suggested that I go to the emergency room, but I decided to stay put till Monday and to take only the antibiotics.
I had been contemplating removing the J-tube all together for a few days anyway.
After consulting with BWH’s surgeon, my oncologist removed the J-tube in a second this morning. It was an unbelievably easy procedure, and I did not feel anything. The tube that came out was very long and narrow, and disgusting looking (I should have taken a picture). According to him, the insertion site is supposed to close in a matter of a few hours, and I should feel much better; the tube actually taxes the patient’s body heavily even though it serves as a lifeline. I am excited because I will finally be able to lie on my left side after 6 months of restriction.
In spite of my feeling that I hit the bottom of my health, he was quite happy and cheerful, and said, “ you are doing very well. You should carry around a snack bag all the time for a while, now that you are on your own.”
According to him, most esophagectomy patients lose at least 10 pounds, which will become their new weight baselines, and I have to be careful not to lose any more weight. OK…my new figure is that of Audrey Hepburn, then? I should go to the GAP, buy a new pair of “slim pants,” and make all the teenagers envy my figure.
When I saw the BWH surgeon, his primary assistant surgeon boasted, “no matter how long it takes you to regain your eating ability, you will be OK because you have a J-tube, be it three months or a half year.” His statement betrays the limit of a young surgeon’s understanding of the human body. Your body is not a machine; it rejects foreign objects, because it tries to heal by itself. I loved his unequivocal belief and passion in science, but hope that he will open his eyes to the mystery of life more.
Even though the infection was not really a big problem, you panic anyway. I am so thankful that Mark decided not to go to Australia at this time.
Come to think of it, probably this was a humbling and defining moment of our relationship going forward. Precancerous day I must have thought it was crazy that Mark cancel a professional conference on my behalf, considering it heroic that I perceiver the difficulty no matter how big it is. Well, actually it may be more heroic to admit that you need help, and accept another’s sacrifice. I hope that he would do the same to me (not in this kind of context, of course.)
In reality, however, Mark had to waste one full day to reschedule his trip in summer 2007, and pay an extra 500.00!!
2006-11-16 brooding 鬱っぽい？
The weather in New England has been gray and dark, and it is affecting my mood a lot. I have had difficulty dealing with cold and dark weather every year, maybe because I was born in a subtropical climate in Japan (My home town’s latitude is as south as Georgia.) However, it is affecting me more than usual this year, probably because of the monotony of my life with no apparent improvement in my eating training and gaining stamina. All in all, it is accurate to say that I am feeling quite low, and suffering from the post-operation- depression, in spite of the fact that I worked on an interpretation assignment successfully for an institutional investor last Friday.
The client was satisfied with my performance, I imagine, because he wanted my name card for the next opportunity, and asked me to keep the confidential presentation material for the future.
Even though it was only a 3-hour assignment, it was exhausting, and my incision started hurting very badly, and I had trouble controlling my cough. Rather than elated with satisfaction, I was convinced that I could not work for at least for another month, and wondered if it is possible to continue doing this line of work in the future.
Fearing that I am losing my optimism, I had Mark check out “It’s Not About the Bike: My Journey Back to Life” by Sally Jenkins from the library, the book about Lance Armstrong who has won the Tour de France six times after conquering the terminal stage testicular cancer. It was a very-easy-to-read book, and I could empathize with him a lot. But what I got from the book is that I have to go through this depressing and lonely part of my journey by myself; Lance himself went through the period when he simply played golf, not knowing at all whether he wanted to make a comeback.
This reminds me of the “grief cycle” theory; when facing a loss and life changes, people go through four stages: shock & denial; anger, resentment & depression; coping; and acceptance and moving forward. Where have I been and where am I now?
I was tremendously optimistic and forward looking right after the hospital discharge, because I was still in shock and denial; I accepted the interpretation assignment when I was doped up with narcotic pain killer. Now the anger and resentment have sunk in. I am angry because my body is still full of chemicals from the chemotherapy, anesthesia, and painkillers, and feeling the effects. I am angry because people assume that I am now back to my old self. I am angry because patients who suffer other types of cancer can keep working at least part-time, because their treatment is not concurrent chemo/radiation. I am angry because people only praise the forward looking and courageous mentality and behavior, and do not appreciate the necessity to weep and curl in the fetal position (and simply think that you should go see a shrink.) I am angry because this monotonous eating training seems to stretch on forever, at least for a half year. I am angry because I still cannot drive. I am angry because nothing tastes good, and I have to cook for myself. I am angry because I do not have agility and energy to pick up and clean up the mess in the house….
When you are stuck and cannot find significant changes internally, changes can be forced from outside. My oncologist told me yesterday to stop using the J-tube for a few days, because they did not find any problems in the modified barium swallow test; food is going where it should go, and the discomfort I am feeling is nothing unusual for the patient who went through the esophagectomy. He thinks that it is best to take out the J-tube as soon as possible because I have had it for such a long time, and actually I have been experiencing pain around it inside the intestine.
I have been feeding myself between 1 can and 1 1/4 cans for the past few days, because of the difficulty maintaining my weight. No matter how much (I thought) I ate, my weight kept going down. His advice was “ do not eat too healthy”: I tend to eat low carbo, protein rich and vegetable centered meals, which is not too beneficial when you need to gain weight. I need to eat like a professional bike rider before the race; a lot of carbohydrates. I will see whether I can maintain my weight without the J-tube intervention.
Another small change in my life; A few days ago, I stopped taking the pain medicine all together; Tylenol and Ibuprofen. It was difficult to stop because it was one of the rare comforts I had, and was like fighting with the addiction, I imagine.
This Blog is about eating, sleeping and walking, which are occupying my days recently.
It has been full two weeks since I started eating “somewhat” solid food. I have been feeding only two cans of food for the last few days, and expanding my menu quite a bit. It is wonderful that I can eat cheesecake and pumpkin pie without guilt.
Some dishes that I have cooked last week (yes, I actually cooked with Mark’s help) include Japanese Miso soup with pork (wonderfully nutritious dish with miso and ground pork with a lot of minced vegetables) Mediterranean fish soup with cod and vegetables, Chinese Maaboo tofu (spicy Chinese tofu dish), and over-cooked pan sticker, etc.
I am grateful that moderately spicy food does not bother my esophagus. As long as I can taste flavorful food, it does not bother me how small the amount is or how long it takes to cook. My days are spent racking my brain thinking what I can cook for dinner, concocting it, and eating a tiny amount of it very slowly. Even though many patients at my stage seem to supplement the nutrient with commercial protein shakes, I cannot do it; I do not like sweet drinks or ice cream that much. My aversion to shakes may help me get back to normal food fast.
Even though my recovery is going quite well, I am suffering from insomnia from hot flashes, which probably are caused by the forced menopause and J-tube feeding. The menopause was accelerated by the combination of chemotherapy, radiation, and surgery. J-tube feeding at night makes my metabolism fast and raises my body temperature. It is very frustrating to stay awake at night when you feel that you should be sleeping; I used to be able to fall asleep immediately and sleep through the night without any problem. I hope that by the time my J-tube comes off, I can sleep a little better.
Since the middle of last week, I have been walking a mile a day. As the weather is getting cold and nasty, I often walk in the shopping mall. Walking in the mall has an advantage and disadvantage. The first time I walked in the mall last week, I found a “sushi chef” nutcracker (photo on 10/26,) and had to buy it. Since I have not gone to the stores for a long while, my immunity and resistance to the shopping impulse seems to have weakened.
The photo is the Pedometer that Mark got for me from LL Bean. This is helping me keep track of how far I have walked.
On Monday I went back to BWH for the post surgery check-up. The infection has cleared nicely, and everything else is going well. It is amazing how quickly the scars are healing.
“You can eat anything you want,” the surgeon announced. “Anything?” I could not believe my ears.
Since we had about 45 minutes before seeing a nutritionist, Mark and I sat down at Au Bon Pain and ordered a sandwich (for Mark) and vegetable soup. Even though I was told that I could eat anything, it was scary to eat anything chunky. I ate mostly the soup broth with a few minced vegetables, chewing very carefully.
I am glad that I was cautious, because we discovered from the nutritionist that there are quite few stipulations about what not to eat for the first few week; I can only eat very soft vegetables, I have to be careful with dairy products, it is best to avoid chicken, etc.
What I have to balance now is how to wean myself from the tube-feeding. The nutritionist suggested starting with one less can. Unfortunately, I was not feeling too well last night, so I reduced the amount of food by half a can, and started eating some soft food. What I learned is that if I do not reduce the tube feeding enough, I do not get hungry.
Total food I have eaten so far today is; One scrambled egg, brown rice gruel (1/3cup), yogurt (1/2 cup), banana (1/5), 1 slice of cheese, 1/4 cup of vegetable rice soup. Since I do not get hungry at all, I went out for a 1/2-mile walk in the rain. I am planning to reduce the canned food more tonight.
Another weaning happed today. I was “discharged” from the visiting nurse. She has been visiting me every week since my J-tube insertion in June. “You are one of the quickest recovering patients, and I am confident that you can manage your health from now on. I won’t be visiting you anymore. Sign here.”
With these weaning milestones, I finally feel that the end of this journey is near, and that I should start preparing for a normal life, post-cancer-version; work, hobbies, exercise, travel, and service to others.
At BWH a doctor who works with my surgeon as his chief assistant, and who participated in my J-tube insertion as well as my esophagectomy, explained to me what my diet would be like. He started by saying, “You are a patient who reads a lot, and you probably know all this…” I somehow felt embarrassed that I had given such an impression to the doctors. “Well, I could not help it. You can find so many articles on the Japanese internet because this is the 6th most common cancer in Japan.” “No, no, I am saying that in a good way. It is good for you to gather information.”
Thanks to my friends, some of whom are doctors themselves and others of whom have strong insider connections to the Japanese medical establishment, I was blessed with up-to-date knowledge about this cancer. For my doctors, however, I could have been a patient who is difficult to deal with.
“Everything went well, no cancer cells were found in the esophagus or in the removed lymph glands. You belong to the group of patients who will most likely survive the cancer. Statistically the survival rate is 50%, ” the surgeon said and left. It is sobering to realize that esophageal cancer is still a very difficult cancer compared to some other cancers (stomach cancer in Japan has more than a 90% survival rate, for example.)
I would have been dismayed to hear the number 50% in my pre-cancer days. With my cancer experience, however, I feel that anything can happen to us in life, and that we simply have to deal with each thing one at a time. 50% is not a bad number.
Tomorrow is the surgery day, and I am ready.
During the past few days, Mark and I spent time in Maine. My esophagitis is cured almost 100%, and we could go out to restaurants and enjoy meals. According to Mark, I have been eating like a horse. Since I am eating so well, I stopped using the J-tube and still managed to gain 2~3 pounds. Now I am back to my normal weight.
Up in Maine, where LL Bean and other factory outlets are only 30 minutes away, I purchased two pairs of activity pants from GAP, a pair of overall pants from OshKosh (boys’ size 14/16), and a pair of cute “cat” earrings for after the surgery.
Yesterday we put cement blocks underneath the top bed legs here at home, and created a slanted bed surface of about 15-20 degrees. In the surgery, the surgeon removes the esophagus and re-creates the esophagus with my stomach, and I will lose the stomach function and the valve between the esophagus and stomach. Without the slanted surface, the stomach acid will regurgitate up to my mouth. By elevating the headpost of the bed, I do not need to use extra pillows to prevent this.
I feel sorry that Mark has to get used to this new way of sleeping, but it might work a miracle for his snoring problem. At least I did not hear a thing from him last night.
The photo is the pair of slippers I bought for the hospital stay. In August when I was feeling very sick, I dreamed that I was climbing up a steep hills with sure and steady steps. After that day I started feeling better. In the dream I was wearing red sneakers. The color is not quite red, but will do to remind me of those steps during the recovery period.
I have been receiving tremendous support from my family and friends. I feel sorry that I could not send you the thank you notes now.
Thank you very much for your support and prayers!!
We decided that Mark will keep reporting on my situation in this Blog site. One page covers 5 entries. If you click ＞前の五日分 on top of the page, you can go back to the previous page.
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