Landis Vance's Open Salon Blog

Cancer and Loving Oneself

Sun, 22 Jan 2012 22:01:31 -0500

Earlier this year I underwent two massive surgeries where my cancer tumors were excised from my lungs. Being rid of the tumors, I was going to be back on top of my game. Or, that is what I thought - that I would go back to being the way I was before my cancer came back. So, when I get tired or when I can't do what I want to do during the day I get angry with myself and wonder what in the world is wrong with me. Of course the thought never enters my head that I have cancer. I don't know how to interpret this. Is it a positive thing that I continue to look so far past my disease that it fades away in my consciousness? Or, is it a negative thing, that I am so out of touch with my body that I lose track of its exact state and needs?

The past few days have been frustrating. I was doing well and then the norovirus swept our little valley and I contracted it. It only lasted about a week but since then I have had a hard time bouncing back. Tonight while I was once again wondering what was wrong with me, the realization finally came shimmering into my consciousness that I have been in active treatment for my cancer for over 4 years now. Four years of taking very strong medicine that progressively takes its toll on my body.

My red cell counts are falling. They have been since last September. No matter what I do I cannot get them back into normal range. I know this because every time I have chemo (really biologics and hormone treatments) I get a copy of my blood test and it shows my red cells are low, and my hematocrit, and my monocytes, etc. I suppose that is why I don't feel good. I don't have enough of whatever these are to do whatever it is they do.

I guess it makes me feel better to have something "scientific" I can point to to say I really don't feel well. Why is it that the fact that I don't feel well is not sufficient? Why do I have to have corroboration from some impartial source? That is sad. That makes me very sad to know this about myself.

I have always found it very hard to love myself when I am ill, to allow myself to sleep in a soft bed and to coddle myself, to spoil myself. Instead I go around feeling anxious and vaguely guilty and keep trying to do all of the things that I "should" be doing and, obviously, failing. I guess it is that Puritan ethic and a childhood of only being loved for what I did rather than for who I was.

This cancer continues to be my teacher. Most of the lessons are painful but they all seem to be calling me to an intrinsic fullness of life- not the fullness of life that others can see, but an interior sense of well-being and peace, of acceptance and self-love that has always eluded me. Maybe I will finally get it before the end, I hope so. I think that is the basic lesson of life, that you have to start by loving and accepting yourself before you can love and accept others.

Wish me luck!

Finding a Rabbit in Hat

Wed, 5 Oct 2011 12:10:11 -0400

So dear reader, the last we spoke I left you hanging with my quandry of whether or not to go back on chemo. For new readers this may seem like a simple answer but for me chemo is highly problematic. I have been fighting this disease off and on for 8 years. Every time that I have had chemo I have ended up in the hospital an infintesimally small sliver away from death. It may be true that I will die from this disease but I prefer to die from the disease not from the treatment for the disease!

My friends and family were concerned that I was giving up when I decided to not have more chemo. They began to treat me carefully as though I had begun the final journey, But I had not given up; I was putting my hand in every other top hat I could find hoping to pull out a rabbit.

Facts: no new tumors, all the tumors were in the same place, they kept growing. Question: Could we do something localized? I remember my male friends with prostate cancer having radiation seeds implanted and I was wondering if we could do something like that. After a number of conversations with my medical oncologist, she agreed to refer me to a surgical oncologist to evaluate whether or not any of these more localized approached might be possible.

It was quite a journey. Before we met, the surgical oncologists had looked at my file and become familiar with the particuliarities of my case and had let me know that they thought they would be able to help. My first face to face was quite extraordinary. I have never had a physician discuss philosophies of treatment and my particular goals before. It seemed to me that it was crucial to this surgeon that I was aware and accepted that any surgical intervention would not be a cure, that I knew this disease was incurable. I appreciated our conversation immensely; I have never approached anything without being clear from a philosophical standing on the reasoning.

So, in addition to his multiple degrees and surgical oncology fellowship training and all of the rest of the paper trail that seems to indicate skilled physicians, the surgeon and I thought in holistic terms and were on the same wave length. That was more important that I can convey, especially as I was trusting this man to cut out 35% of my lung tissue in an effort to improve the quality, and possibly the longevity, of my life.

In May they operated on the least compromised lung. It was a minimally invasive surgery and I rebounded quickly. This, I thought, was going to be a snap and I felt guilty when I thought of my metavivor sisters (others with stage 4 breast cancer) for whom this opportunity did not exist and who were wedded to traditional toxic chemo.

In June they operated on the more compromised lung. It was a full blown thoracotomy where they cut off one entire lobe as well as a section of the remaining lobe. My ribs were fractured from having been spread,and, while my skin was numb over a large portion of my chest, I had phenomenal nerve pain, muscles were cut through and no longer functioned, not to mention that I felt like I was smothering. It was frightening. painful, and debilitating. I no longer felt guilty about having chosen an easier road than my metavivor sisters - I was paying the full load of suffering up front.

After 5 weeks it started to get better and I felt that I might actually be able to get past the pain. It has now been 4 months and I only have patches of numbness now, my muscles are starting to be useful once again, and I no longer gasp for air. I have gotten used to the feeling of not being able to breathe as deeply but I do get enough oxygen in every breath.

Three months after the surgery I went in for another scan to establish my new post-surgery baseline scan. I was expecting to have the scan look all shiny and new without the distinctive crab-like form of my former tumors. But, as with everything in cancer-land, a new suspicious lesion is now visible near where one of the tumors used to be. We won't know whether it is cancer or not, but I suspect that it is. The tumor site that it is near is the one tumor that never behaved no matter what we threw at it, the one that grew when all the others were shrinking.

Even if this new site is cancer, I have been able to reset the cancer clock. I hope that I have regained the 3 years that it took for the original metastases to grow to the size where they imperiled my life. I may have less time than that before I am back in the same situation as before, or I may have more time. With this disease you eventually learn not to hope and not to expect, just to take it as it comes.

But for now I have gained 10 pounds and have plump rosy cheeks, When I look in the mirror I no longer see someone who is dying. I am living and loving. Life is full of surprises and adventures and is very very good!

Surviving and Catching up

Fri, 25 Mar 2011 13:03:40 -0400

I have not written in almost a year because I have been overwhelmed and very busy surviving. Those who do not think that surviving takes effort, focus, and determination, have never had cancer. I am amazed at how much energy it takes to just get through a day, and if that day has any kind of emotional upset - well, you can almost just write off the next 2 or three.

Those who have been following me for a while know that when I last left you I was convinced that I was going to die. I spent the next few months getting my head around that idea and becoming ok with the prospect. I continued with treatment but we were not expecting much in return and I turned my mind to accomplishing all of the things that I would need to do before my death.

My goddaughter, whom I love very much but see seldom, lives in Scotland. Other than my husband, she is my primary heir and it was important to me to see her one last time. So, I planned a wonderful trip to Scotland and a friend decided to join me. We went by ourselves, stayed in hostels, traveled on public transportation and used all of the money we saved to eat outrageously good meals.

About halfway through the trip I started feeling better. 'Hmmm,' I said to myself, 'am I actually feeling better or is it because I am having such a good time?' When I got home I had some scans that found that most of my tumors had actually shrunk (except one delinquent that isn't minding anything we do to it). This was something I wasn't expecting and was totally unprepared for.

So, the next few weeks were spent in trying to adjust to the idea of living. To adjust to the idea that there was, indeed, a faint possibility that I might actually outlive my husband. Things that I had been able to take in stride suddenly became annoying. My life seemed too small, I didn't seem to be doing all that I was capable of doing, perhaps I had made wrong choices recently that needed to be rethought.

All in all it was a very tumultuous time. As soon as I came to a place of relative tranquility I had my next scans. Well, whiplash isn't just an effect of car wrecks! The results were not good, nothing shrank, some things grew. Gone are the ideas of outliving my husband, replaced by the thought that I may really die within the next year or so.

In talking with my oncologist the only possibility for me now is to try another chemo agent. I swore that I would not do this, but now that the reality has come I am having to at least consider it again. I am truly in the odd place of, as one person said, fearing my treatment more than my disease. I think this is something unique to the cancer experience. I do fear it.

Everytime I have been on chemo I have been a whisker from death. Even though this possible new agent is supposed to not effect most people, there is a distinctly high possibility that it will effect me, and the side effects include kidney failure and a remaining life on dialysis. Other treatments are awaiting that we have not considered because they damage the nerves and I already have damaged nerves from polio. Perhaps I could take them, but then I would spend the rest of my life in a wheel chair, unable to do most things that I love.

Don't know what I will choose. I am taking time to make the decision and taking into consideration not only how much longer I might live with or without the drug, but also the quality of my relationships, and what I really want out of what is left of my life. I wish it wasn't all so confusing and tiring, but it is. There is no clear cut path, no guaranteed route to success. There is only dogged perserverence, hope, and the self struggling to hold onto its dignity.

Making a decision but fearing its consequences

Sat, 17 Jul 2010 12:07:20 -0400

A few months ago, after going back on chemo, I decided that I would not do any more chemo until the new stealth drugs are on the market. You see I am on of those pesky outliers, the ones that don't fit the statistical profiles and probabilities. After being on the threshold of death due to cancer treatment on more than one occasion, I decided that I would rather feel good on no treatment than feel bad and possibly die sooner because I was having cancer treatment, if that makes sense.

I am still convinced that my decision is the right one for me. I have been taking Herceptin alone since I discontinued the Xeloda 2 months ago. Statistically Herceptin is only 20% effective if it is not taken with a cytotoxin, but I am betting my life that it is the best course for me.

That being said, on Monday I will go into the CT scanner and learn what has been going on since I made this momentous decision. My tumor markers have never indicated that I have cancer, so the only way we know what is going on is through periodic scans. (I probably have enough radiation in me that if I don't die of this breast cancer I might of some later radiation induced one. It is such a paradox, this disease/treatment.) I am scared. I am scared that we might find the tumors have grown and that my life expectancy is dramatically reduced. I am scared because I have run out of options.

It is one thing to look death in the face when you have a treatment buffer between the two of you. I am afraid of what it is going to be to look death in the face when it is just the two of us. I am trying to tell myself that in reality nothing will have changed; I am still me, my life is still my life, my friends are still my friends. Yet, it will be totally changed in ways I can't and don't want to process yet.

As a behavioral scientist that has worked with cancer patients for many years I know what I have to do, I know what the tasks are before me. I have completed my life review. I am content that I am loved, that my life has had meaning, and that I have done work that has benefited the greater society. I have no regrets and nothing left undone. My "bucket" list is practically nonexistent. I have friends who have been touched by this disease before as loved ones have died; they know what lies ahead and they have promised that I won't be alone when the time comes. I am overwhelmingly blessed.

I also am overwhelmingly greedy! I love my life and I want more of it. I want to float down the river and catch a beautiful little cutthroat trout. I want to watch a Dutch oven turn over and spew its contents all over my driveway as my friends laugh. I want to explore the mountains more and communicate with the wild animals. I want to spare my friends the pain that will eventually come.

I'm not afraid of death. I am not so sanguine about dying of this horrible disease. But mostly I am afraid of having this amazing life that I worked hard all of my life to develop taken away, of not being able to share the wisdom that was so costly to acquire, of not being able to help heal others. As one patient said to me, I will miss being able to smell and touch and see and hear all the things this body makes possible.

I am confident in the decision that I made, but that does not mean that I get a free pass on the emotions that will result from its consequences.

To treat or not to treat - that is the question

Mon, 28 Jun 2010 18:06:24 -0400

The last time I posted I had just gotten the news that my cancer was growing again. The previous "soft" hormonal treatments were no longer working; it was time to bring out the big guns. My doctor and I went over all of the options and picked the chemotherapy agent that we thought would do the job with the least side effects. I was prepared to give it the old college try, even though I had once said that I would never go through chemo again, because I do want to live. I love my life and would like to keep it a bit longer. However, the treatment had its own surprises and once again I have had to make decisions and go my own way.

I seem to be an outlier - every cytotoxin I have ever been on has tried to kill me. This time it was the xeloda. After 10 days of being on treatment I ended up in the hospital with every single side effect listed and then some. My GI tract was burned and blistered from mouth to bottom. I had hand/foot syndrome, an infection they could never identify but that Cipro knocked out, massive explosive diarrhea and subsequent dehydration, phenomenal gut pain, and a fungal infection on my skin. I was also anemic and my ketones and liver function tests were off the charts.

I was in the hospital for 7 days before they would trust me to come home. Eating was a torture but I worked my way up from fats and meats to whole grain. Once I mastered them I got to move on to cooked veggies - yahoo!

The upshot of all of this is that I felt that I needed to review the options available to me. I decided that I will not do traditional chemo anymore. I will continue on with Herceptin, but the traditional cytotoxins I will steer clear of.

This has been a decision that has been hard on my friends and family. We are so bought into the scientific studies of treatment outcomes that we forget that the science really only works on a bell curve. If you have someone like me who does not fit within the bell, you really don't know what treatment is going to do.

I am convinced now that if I do traditional treatment, it will not just make me miserable, it will kill me. So I have decided to take my chances on feeling better for whatever time I have left. It may be short or long, but at least I won't be in the hospital wishing I was dead already. My husband supports me in this although it has raised a lot of emotions for him that I think he would prefer not to deal with.

We won't know what this decision means in terms of my longevity until I have my next scans so we are living in limbo to some extent, but we are LIVING each moment and that is the point.