Circle of Healing

A couple of weeks ago I did something out of character. After being told by my oncologist that we needed to switch chemo drugs (my latest CT scan showed significant tumor growth), I challenged his decision. I had three reasons for this. The first was that Doxil, the drug I had been taking for the last 4 months has a reputation for being slow to kick in. The second was a personal observation that my abdomen had recently begun to flatten slightly. The third was my latest CA-125 tumor marker blood test - it had dropped 490 points in three weeks. A CA-125 test is never as accurate as a scan, but in this case I thought the drop in numbers suggested a turnaround. Maybe the Doxil was slow to get started - hence the tumor growth that showed up on the scan - but was now at last “kicking in”.
So I asked for a second opinion. My doctor’s response to the request (conveyed through his nurse) was gracious. Of course it was completely understandable, he said. His nurse then set up an appointment with another doctor in the practice. (I didn’t have time at this point to go outside of the practice without significantly delaying my next infusion.)
After what seemed like a good start, things started to go downhill a bit. The doctor I was scheduled to see for a second opinion seemed more like someone who would put a rubber stamp on my doctor’s first opinion.
Sadly, this turned out to be true. When we met, the first words out of her mouth were that she and my doctor had been working together for 20 years and they almost always saw eye to eye on patient treatment recommendations. Hmmm. Not an auspicious conversation opener for a second opinion. As the conversation went on it became clear that she was putting more effort into convincing me of the rightness of the first opinion than considering any other possibilities. For example, she tossed off my mention of the 490 point drop in tumor markers by saying that there could be a lot of reasons for this. In fact, she said, my chart showed that I had had my ascites fluid drained recently which reduces peritoneal inflammation. Less inflammation in the peritoneal cavity could cause the numbers to go down. I asked her to take another look at my chart - the date that the ascites fluid had been drained was after that of the CA-125 test, so that couldn’t be a cause.
She continued to make her case. Later in the conversation the CA-125 markers came up again and she repeated her statement about the ascites drain causing a drop in the numbers that would be unrelated to tumor activity. I indicated again that if she looked at the dates in my chart she would see that the ascites drain happened after the blood test and therefore couldn’t have affected it. Unbelievable.
After going back and forth like this for a while she said she would leave it up to me whether to continue with Doxil or switch to the new drug, a route she still favored. I asked for another CA-125 test to help me decide. When the test results came back later that day, they showed another drop of 410 points. Situation resolved. At least for this month, I would stay the course with Doxil.
But I guess the second opinion I asked for had to be my own.

I was on the phone with one of my brothers this afternoon, touching base. He asked how things were going, said that he understood that the last scan showed basically no change in the tumors. (Where did he get that information from, I wonder?) Sadly, no, I told him, the scan showed that the tumors were bigger. Which I knew before I heard the results, but that’s another story. We talked some more and as the conversation unfolded, I voiced something that I had never expressed before which is a huge, upsetting change in my life these last few months. Here’s what it is: I can no longer ignore the fact that the disease is here. It used to be that, yes, I knew I had cancer, yes it was nerve racking to keep trying new drugs in an attempt to find the “one”, but I still had energy to do most things, I could still eat normally, my clothes fit normally. Now, the disease announces itself in every possible way. I have SO much less energy than I did 6 months ago, my activities are truly restricting. Eating, once a pleasure, has become a chore - I feel pressure to consume as many calories as possible because of the alarming lack of meat on my bones, and yet because the tumors are crowding my stomach, I have to pace myself very carefully to avoid feeling a lot of pain or nausea. The amount of weight I’ve lost is not only creepy to see in a mirror (or in the eyes of a friend who hasn’t seen me in a while), but it makes it hard to settle in for sleep - my own lack of cushioning means that the surface of the bed or recliner I am trying to sleep or nap in better be pretty darn cushy in order for me to relax. Everywhere I go, the cancer is there, leering at me. No place to run, no place to hide.

These days, taking care of my body is like taking care of a delicate, cranky baby.
Getting my body fed, for example, is a rather complex process. There is a tumor crowding my tummy so it can’t hold as much food at one time as usual. But Baby needs lots of nutrition and calories. So Baby’s Mum has to be very tricky to slip those calories in without making Baby feel sick. That means lots of planning - thinking about the right types of food, nutritious and calorie rich and yet soothing - no spicy chili or even spaghetti with tomato sauce, the list goes on and on. And Mum has to keep Baby on a good feeding schedule every day. If Baby sleeps in (which she often wants to do) and breakfast is late, that means lunch and dinner are late and there is a good chance dinner will be a nightmare. A late dinner means Baby is very tired and her tummy will hurt more and the pain will make her think about throwing up. No, Baby, No!
Baby’s Mum sometimes gets very tired of feeding and soothing Baby, but there is nothing else to do.
Please get well soon, Baby.

Sometimes being an informed, intelligent patient can be a handicap. Doctors (or at least the less experienced ones anyway) tend to voice their concerns about something almost as if I were a colleague without realizing what effect their unrestrained comments are having on my stress level. I had one such experience when I went in to get my lung drained for the first time. It was a scary procedure and I was nervous. I became even more so when I realized that the doctor doing the procedure was a resident, not a full-fledged doc. There was nothing to do for it, so I just calmed my fears as best as possible and submitted to the procedure. Later, feeling quite relieved that it was over, I relaxed enough to chat with the resident, tell her I thought she did a great job, etc. “Thanks”, she said, “although I have to say I was a little nervous when you moved…” Wait a minute! You were nervous when I moved? When did I move? What were you nervous about? Was I moments away from a collapsed lung? Whatever possessed you to share that with me? If there’s a real concern, please share it in private with the attending physician and then if there is anything you think I need to know, then go ahead and tell me.

Otherwise, please keep your thoughts to yourself!

Two nights ago a couple of friends of mine - Geoff and Leah - came by to bring food and moral support after a chemo session. They brought a lovely pasta dish and we talked and ate for about an hour. One of the topics for discussion was their little dog who had recently broken his paw - again. Leah has been feeling frustrated because the cast essentially means another 4 - 8 weeks of of trying to keep a playful puppy quiet and still. Worse still, they are headed for a vacation at the beach where there will be lots of sand to romp around in and lots of little children to romp with. What will they do? Keep him off the beach? Leave him at home? But her mood changed when she talked about her intention to have all their vacation mates sign his cast. First, she laughed at the sheer silliness of it - people signing a dog’s cast just the way middle-schoolers would sign the cast of a friend banged up from a skiing mishap. But, she went on to say that she believed that when people who cared about this little dog signed his cast, they would at the same time impart healing energy with their good thoughts and wishes for the dog.

I think it’s the same way for me when people come to visit. They may be bringing food, or helping out with little household tasks, but the real healing influence is their good thoughts and intentions for my healing. They don’t just come over to feed me or to help out with the dishes. They are signing the cast.

This Thursday, May 15th I’ll get another dose of Doxil. Dose number 4 to be exact. So that means time to gear up. First there’s the side-effect prevention detail, doing everything I can to minimize Hand and Foot Syndrome (HFS) and stomatitis. HFS would be kind of fascinating if it weren’t so troublesome. It’s caused when heat, friction or pressure breaks the capillaries in the hands or feet and the chemo drug leaks through to cause skin problems. The skin problems can become so severe - open sores leading to infection, etc., that chemotherapy can be delayed or the dosage reduced. An appealing concept, on one level, but not so helpful in achieving the goal of actually getting rid of the cancer.

The game plan to prevent HFS is to avoid heat, friction or pressure during the first 3-7 days after an infusion. The things I do might seem ridiculous, but believe me, they work. I avoid driving completely during the first 3 days because even using the steering wheel puts pressure on your hands. I have friends who volunteer to wash dishes (avoid heat), chop veggies (pressure) and do other food prep or household chores that would create pressure, friction or heat. So a couple of days before chemo, I set up the calendar on my Lotsa Helping Hands website, with the chores I need help with, and then people sign up for whatever time slot works for them. A very neat system, actually.

Last but not least, I prep for HFS by mentally shifting gears where certain activities are concerned. Hand washing? Gentle, very gentle. Hand cream? Lots of it, but dab it on, move it around ever so gently until it absorbs. No pressure.

The other side effect I want to avoid is stomatitis, inflammation of the mucous membrane of the mouth. This I do by swishing and swallowing 9 grams of l-glutamine three times a day, before chemo begins. I continue the regime for a bout a week, then cut back to about 3 grams a day. Glutamine is amazing. It’s produced naturally by the body and most healthy people manufacture all they need. But tumors are glutamine traps, so if you have cancer, your body becomes glutamine-deficient. There are tons of good things that glutamine does for your body - enough for a whole other post - but what it does to prevent or minimize stomatits is support and/or heal the mucous membranes in the mouth. I had stomatitis during my last round of chemo but I kept swishing with glutamine and it eventually disappeared. THANK GOD!

Then there is psychological gearing up - getting chemo always feels creepy and weird - the drugs are so powerful and God only knows what they do to the rest of your body while they are killing cancer cells. So I am going to the library the afternoon to pick up some good reading, also maybe a book on CD for those times when I want to elevate my feet and hands (another good prevention mechanism for HFS) and then of course there’s always music. I found a Border’s 40% off coupon for CDs in my inbox the other day so this morning I bought two lovely, new-agey CDs. Another mechanism for psychologically gearing up is prayer. Every day I say a beautiful, long Healing Prayer but going into chemo I try an approach with a little more “spark” - there’s a special prayer called the Fire Tablet in my Baha’i prayer book which is actually so powerful I’m always a little afraid to open the book and begin it. But desperate times call for desperate measures. Here goes nothin’.

According to Wikipedia, “…the defense readiness condition (DEFCON) is a measure of the activation and readiness level of the United States Armed Forces… DEFCONs are matched to the situations of military severity. Standard peacetime protocol is DEFCON 5, descending in increasingly severe situations. DEFCON 1 represents expectation of actual imminent attack, and is not known to have ever been declared.”

DEFCON has been rattling around in my brain recently, ever since I watched the delightful Matthew Broderick movie War Games a few nights ago. Broderick plays a brilliant, disaffected high school student who inadvertently puts the U.S. Military Machine into high alert by breaking into a computer system where he thinks he playing a game called Global Thermonuclear War. In the movie, as the perception of military threat increased or decreased, the DEFCON settings changed correspondingly.

As I was driving home from the oncology clinic today, I realized that I’ve been operating in a state of high alert for the last few months, ready to do whatever it takes to protect and defend my struggling body. A DEFCON 2 state of mind. I was exhausted and worried all the time. Ascites fluid had collected in my peritoneal cavity, making it hard to eat and just generally exhausting to tote around - when it was finally drained the fluid filled almost 4 liter bottles and I was instantly 8 pounds lighter when I stepped on the scale. Around the same time, my left lung had also been filling with fluid. For about 3 weeks, I was coughing constantly, making it harder and harder to sleep and a rib eventually cracked under the strain. The fluid was drained off and the coughing stopped, but it started up again and we had to drain again after about five days. That held for a while, but eventually it began to fill up again. I became more fatigued and short of breath. Taking the dog for a short walk left me breathless and it became an effort to carry on even moderately long conversations. And while all this other stuff is going on, an already besieged body is trying to deal with the effects of chemotherapy and kill a few cancer cells here and there too. No rest for the weary, though. Just a short week after a chemotherapy infusion I had to submit to a procedure to implant an pleural catheter in my lungs to keep them from filling up. A relatively simple procedure, it should have been easy to bounce back from, but I found myself sleeping for two days afterwards, my body an absolute shipwreck.

But today felt like the end of the Cold War. It’s been almost a week since I had the pleural catheter inserted and the ache in that lung has virtually disappeared. Learning to draw off fluid with the help of the catheter has started to feel less creepy as of yesterday, when my friend Kathy and I drew off 200 ml without incident. And last but not least I made a quick trip to the oncology clinic today to deal once again with fluid in the belly - it’s been a month since they drained the ascites and I had been getting bloated and uncomfortable again. Using a local anesthetic, the good doctor removed a liter and a half of fluid, and sent me on my way. The war’s not over, but things are looking up. Tummy fixed, lungs fixed, all systems stabilizing. Mental state? DEFCON 4. Feels pretty good.

I’ve noticed that most of the medical professionals I work with go to great pains to reassure, and minimize the scary things that could go wrong. In general, this is a good idea, as you don’t want to raise a patient’s anxiety level already higher than it is. The problem for me recently is that I bought it into it a little too well, with a frightening consequence this past weekend.

I had a pleural catheter inserted surgically into my left lung on Thursday afternoon and went home to a lot more pain than was advertised, post-surgery. I don’t think anyone was deliberately steering me wrong, but every body is different and I had multiple issues going in to the surgery that complicated things. First, I was only a week away from my last Doxil infusion and my body was already working hard to manage all the side damage that comes as part of the package to kill cancer cells. Then the body is always - day and night - working to beat back the cancer cells, ’cause it knows they ain’t up to no good. Second, I have had fluid in my left lung for weeks, making it harder for me to get the oxygen I needed during that time - another significant stressor. Third, I had cracked a rib a little over 3 weeks ago, (lots of fluid in lungs = lots of violent coughing)and was still having random muscle spasms in that area that were often extremely painful - still more stress on this hard-working body. But somehow by 2AM that night with the help of some oxycodone and my son’s efforts to help me into a comfortable sleeping position, I finally won the sleep I needed to heal. I woke up at 9AM the next morning, got breakfast, took vitamins, fed the dog, went back to sleep for 2 more hours. The rest of the day was pretty much like that - up for a little while, eating, hydrating, puttering around the house, then back to bed for another nap. Then miraculously asleep throughout the night, until I started to feel better.

Then it was showtime. On Saturday, the second day after surgery, it was time to learn how to drain the pleural catheter by myself. The hospital had sent oodles of instructions, video and otherwise and I had a fine session with a very helpful nurse educator who walked me through the procedure, answered questions, gave me her pager number and generally did everything she possibly could to make sure everything went off without a hitch. The first test run actually did go perfectly - my friend Eileen and I drained 800 ml from my lungs with minimal discomfort or confusion about the procedure.

It was test run #2 that was the problem. By the time we were finished I was in significant pain (some pain is to be expected), couldn’t catch my breath and felt compression in my left lung. The symptoms were severe enough that we had phoned the doctor on call and were on the way to UNC hospital emergency room. I was terrified. But by the time we had gotten on the road, I began breathing more normally and had stopped crying out in pain every couple of minutes. Everything settled down and by the time we reached the ER front door, we wondered if it was still necessary to go in.

We called back the doctor, who broke the tension by laughing out loud when I told him I was feeling better now that I was at the ER. Feeling much more calm and able to talk at this point, I went over the whole series of events with him and he gave me his blessing to go back home if I felt comfortable doing so.

So, what happened? As far as I can tell, after talking with the doctor, I had drained out too much and that was causing the pain, shortness of breath and feeling of compression. My lungs had to do some work in order to re-balance and it wasn’t until that happened that I could breathe more easily. Another possibility may have been that after all the fluid was drained, the vacuum action of the drainage bottle was pulling out some of the air that had been left behind (not intentionally) by the surgery on Thursday. I don’t know for sure if that was contributing to the pain and compression, but I do know that it was disturbing to see a bunch of air bubbles flying through the discharge tube when there had been none the day before.

So, while they do everything they can to make these procedures safe and comfortable for the patient, they are not as foolproof or idiot-proof as they’d like to think. The essential reason I had drained out too much was because I was led to believe at one point that the amount drained would be “automatic”, that things were set up so that I didn’t have to make any decisions, it would just shut down by itself at the right time. In retrospect, I know this seems a bit silly, it’s just a vacuum bottle with a drainage tube attached to a catheter inside my body, but this was the impression I got after talking with a doctor a few weeks before the procedure. She was trying to allay my fears that an unskilled lay person could handle this and basically said that there was no skill involved, the system was very well set up to remove the right amount of fluid automatically without disturbing the balance of air pressure. No decisions on my part, which is why I let the bottle suck out fluid long past when I should have shut it down. There is no “automatic pilot” in this procedure - the patient still needs to employ some skill, to tune in to the sensations in the lung to know when it’s time to stop (when it starts to feel uncomfortable, btw).

So yesterday I learned a lesson that I didn’t want to learn. I wanted to believe the “party line” which is that this procedure is pretty idiot proof if you follow the directions, but it’s not. It’s a procedure that still needs some skill on the part of the patient. That’s the bad news. The good news is that after having had this experience, I can see that I do have the necessary skill, because what I learned about what went wrong yesterday will very likely keep me from ever having an unpleasant experience like that again.

I haven’t written in a while, because I’ve been dealing with multiple challenges lately. Over the last several months, this fluid called ascites had been building up in my peritoneal cavity (ascites is a fluid produced by the tumors), and on top of that my lungs started filling up. A few weeks ago I had both drained and we extracted almost 4 liters of fluid (weighing almost eight pounds) from my belly and about 1 liter from my left lung. Relief from both procedures was amazing but alas didn’t last very long. Five days later I was back at the clinic getting my lungs drained again and today, only one day after my chemotherapy dose (Doxil #3) I was told by my doc that the increased coughing I reported was in fact due to more fluid buildup in the left lung. Hence, I have to go to the clinic Tuesday morning to have a more permanent solution to this ongoing problem - i.e., a “pigtail” catheter inserted in my lungs that I can drain myself whenever necessary. I so wanted to avoid getting that done, but I’m worn down from always worrying about whether the lungs are going to fill up again, that I am starting to think it will be a big fat relief to have the catheter in there. Now I just have to hang in there until Tuesday morning, the coughing has picked up a little today and I am praying it doesn’t accelerate over the weekend to the point where I’d have to go to the ER to have an emergency drain. Being in the ER while already fatigued and immuno-compromised from chemotherapy is not my idea of fun.

Lately I’ve been feeling pretty discouraged about my circumstances. It seems that things that used to not bother me about cancer or chemotherapy are bothering me now. Basic battle fatigue. Today I was leafing through a magazine called Spirituality and Health and ran across a short article entitled “Another Reason to List What You’re Grateful For”. It seems that a study was done to asses the power of gratitude to prevent to prevent the rejection of transplanted organs. The study showed that those who kept gratitude journal had “better general health, mental health, and vitality than recipients whose journals focused on routine daily concerns.” (Spirituality and Health, p. 27, March/April 2008) How very interesting. I keep a journal, but it is definitely more along the lines of concerns, daily or otherwise.

In the study, 16 organ recipients, divided into two groups, kept a journal in which they recorded feelings about life, connectedness to others and side effects from medications they were taking. In one group, participants were also asked to list every day five things or people they were grateful for, and why. After 21 days, the mental health and general well being scores improved for those who added the gratitude list to their journal entries. Scores for those in the other group, the ones who didn’t create such a list, declined. Robert Emmons, a psychologist who created the study and also wrote a book about the health benefits of gratitude explains the results this way: “Having a chronic medical condition puts one at risk for deteriorating mental health, and a reducction in one’s sense of general health and vitality is an indicator of this. Gratitude may serve as a buffer against these risks.”

A simple practice to improve mental health for folks with chronic medical conditions? Sign me up!