HOW LONG DO I HAVE, DOCTOR?

Death Foretold: Prophecy and Prognosis In Medical Care is  a book I learned about from one of those perenially informative  articles in the New York Times medical section. Even though I’ve just barely begun to read it, there is a scary rate of confirmation of my own conclusions about what our doctors do and do not tell their cancer patients about their condition. I learned, for instance, that:

A recent five-year, thirty-million dollar study showed, sadly, that even though doctors in the study  were given comprehensive information on their patients’ prognosis and preferences for care, the physician acknowledged  or remembered receiving the information only 59% of the time– and reported discussing this information with the patient only 15% of the time!

The patients themselves confirmed a low rate of discussion with their doctors about their prognosis and their preferences for care; only a minority reported having a discussion with their doctor– despite the fact that the patients in the study were seriously ill with a high risk of death and despite the fact that a majority said that they would have welcomed such a discussion. Sadly, most of the patients in this study went on to experience deaths that, as the investigators documented in rich detail, were very unsatisfactory.

The author goes on to state a very alarming conclusion from his exhaustive research:

When therapy is available, physicians will blithely ignore prognosis.

Taken to its logical end, this mentality leads to patients being treated–even when that treatment is known to be futile– until the moment of their death. Yet the author reflects that “death is increasingly viewed [in modern society] as a passage that can be actively anticipated and therefore managed. To enact these popular visions of death, however, patients must rely on reasonably accurate prognoses from professional physicians.”

To contrast the patient’s need for an accurate prognosis with this quote from an internist is to begin to comprehend how the doctor’s mindset often results in his concealing or avoiding the sharing vital information with his patient :

I get so damn nervous when I have to make a prediction. I feel as if there is no way that I can be right and that if I make a mistake my patients will be angry or hurt. My colleagues would think I was foolish to hazard a prediction in the first place. The way I see it, the only thing I can say for sure about prognosis is that you are bound to be wrong– unless you are so vague that the prediction is meaningless. And people will blame the doctor no matter what: if he predicts a good outcome and a bad one occurs or if he predicts a bad outcome and a good one occurs. You just can’t win.”

The net result of this kind of physician aversion to prognosis is that the patient is sadly, vitally dis-served. My takeaway, based on John’s experience with his doctors (and now very strongly re-inforced by this book) is that cancer patients who really want to know what the future is likely to hold for them must strongly take the initiative in conversations with their doctors, and continue to press until they receive the information they need and have the right to receive.

Stay tuned for more on this topic as I make my way through this book.

 

Posted in doctor patient communication, doctor patient relationship, end of life, Uncategorized | Tagged , , , , | 1 Comment

THE INTREPID WIDOW

Just a short note to let you know that I’ve started a new companion blog to this one, called Shedding Light on the Widow’s Journey. http://sheddinglightonthewidowsjourney.wordpress.com My goal is to fill it with the many  things I’ve learned about living on my own that might be helpful to other new widows. Tentative subtitle: “The Intrepid Widow“. I’ll let you be the judge…

Posted in caregiver to cancer patient, Uncategorized, widow, widow | Tagged , , , | 1 Comment

ATTENTION CANCER PATIENTS WITH SWOLLEN LEGS

If you are a cancer patient who has  been diagnosed with a blood clot and you now have a very swollen leg/legs that your doctor cannot explain, please read on– our experience may illuminate your own.

Just this week, an interview with a physical therapist at  Rehabilitation Hospital of the Pacific was published in our local newspaper. Cheri Teranishi-Hashimoto is not just a physical therapist– she is also certified as a Cancer Exercise Trainer and as a Lymphedema Specialist. What she had to say about swollen extremities in cancer patients so profoundly confirmed my own conclusions about John’s condition at the time that it seemed very important to me to share this valuable information with others who may be experiencing what we did:  multiple doctors who had absolutely no clue about why this was happening to John. Because they had no diagnosis for this sudden and very alarming swelling, by extension they had no suggestions at all about how we might treat the swelling, nor how to relieve the discomfort.

My own diagnosis after hours of Internet research was:

 “post-phlebotic syndrome” (loosely translated as “symptoms arising in the aftermath of a blood clot”), with resulting lymphedema.

John’s symptoms were legs so swollen that the skin was actually splitting open and oozing clear serum. His skin on his legs had also changed color and was a dark reddish-brown, which I discovered was the result of seepage of iron in the blood into surrounding tissues, which actually stains the skin a rusty color. Here is a photo of his lower legs, with one worse than the other, showing how tight and shiny his skin was, as well as the alarming color:

Below are salient extracts from the interview with this lymphedema specialist.

Lymphedema is excess accumulation of protein-rich fluid in the body. Secondary lymphedema occurs as a result of trauma or damage to the lymphatic system, including surgery, radiation or an infection. [Here I would add also: “as the result of a blood clot.”]

Stage 1 is characterized by observable pitting or swelling which can be reversed by elevation, special drainage techniques and specialized exercises. Our skin is very elastic and will continue to stretch as much as it can to accommodate the fluid build-up. However, once the transport capacity of the lymphatic system is compromised, it is always at increased risk for recurrence. When our lymph nodes are damaged, they do not regrow and they don’t repair themselves.

Stage 2 is when the fluid has stayed in the tissues for a longer period of time. It cannot be removed readily by the lymphatic system the protein-rich fluid begins to harden or become fibrotic.

Stage 3 is what is commonly referred to as elephantiasis, where tissue and skin changes are very observable.

Treatment involves two stages of complete decongestive therapy. Phase I, the “decongestion” stage, occurs under the guidance of your therapist. Phase II, the “preserve and improve” stage, is the lifelong care routine which is performed on your own once therapy is completed.

Manual lymphatic drainage is a hands-on technique that helps to guide the fluid from the congested area of the body to other areas for removal. These techniques are taught to the patient to be performed on their own at home.

Lymphedema is not “curable”. For those who do develop  this condition, we recommend that they continue Phase II of treatment for life to decrease the risk from symptoms recurring or worsening.

The article ends with the quotation that inspired me to post this entry: “Many of my patients mention that there is a need for community education about lymphedema and a need for more resources for those affected. [Amen!] You should be able to obtain information from your primary care physician, medical oncologist or other health care team provider. [The word “should” deserves heavy emphasis– our experience was that we did not have access to information from our health care team because they themselves had not been exposed to continuing education on lymphedema and Post Phlebotic Syndrome.]

In our case, there was no manual lymph drainage specialist in our HMO’s physical therapy department who had experience working with post phlebotic syndrome, and only one  therapist outside of our system skilled in this technique.  Our palliative care doctor would not refer John to this physical therapist because she did not agree with my conclusions. She kept insisting that the redness and oozing was caused by overly dry skin and urged slathering with creams and emollients– when the treatment of choice for the oozing of the skin in Post Phlebotic Syndrome is quite the opposite: keeping the skin dry.

Since out medical team could offer no guidance or direction, I again turned to the Internet. I found, amazingly, quite a few YouTube videos on “how to perform manual lymphatic drainage”. The technique seemed quite simple and very unlikely to cause any harm, as the amount of pressure to exert with one’s hands was described as “like stroking with a feather, barely touching the skin”.  A dear friend who is a skilled hospice nurse and has observed skilled practitioners of manual lymphatic drainage in action with hospice patients confirmed that it was very unlikely that I could do any damage in attempting this myself on John. She said that she had seen this technique result in dramatic improvement in just an hour.

To our great surprise, it did seem that John’s legs became less tight and slightly less swollen after just a few minutes of very gentle directed stroking. I continued this stroking several times each day; not only did the swelling of his legs improve, but the red-brown color also gradually faded considerably.

Although we will never know whether this improvement was due to  my attempts at manual lymphatic drainage, there is no question that just being able to offer something at a time when John’s doctors could offer nothing  was a lifeline of hope for him.

This article that appeared so unexpectedly so long after the fact was a big confirmation for me that my instincts were right. What I learned is that manual lymphatic drainage is a technique which is routinely taught to family members as a simple hands-on way to increase mobility and ease the discomfort of their loved one. How unfortunate that our doctors were unaware of this fact.

In doing more research today, I discovered our doctor’s ignorance about this was considerably more egregious in view of the fact  there is an ongoing clinical trial, begun in 2008, to determine whether “complex lymphedema therapy” reduces the severity of Post Thrombotic Syndrome.

“Complex lymphedema therapy” is described as having 4 components:

1. meticulous skin care

2. manual lymph drainage

3. compression therapy (stockings and/or bandaging)

4. exercises and patient education

This trial is being conducted by the University of Vermont and is now in Phase III. In the following description of the trial, I found the ultimate medical confirmation of my own conclusion and an explanation of the link between the aftermath of a blood clot and the development of lymphedema:

While the pathophysiology of Post Thrombotic Syndrome is incompletely understood, chronic venous hypertension and insufficiency may increase the workload of the lymphatic system and may result in over-capacitance with secondary damage and eventual lymphatic insufficiency. In selected patients with PTS, we have noted a symptomatic improvement in those who receive lymphedema therapy to the limb.

Knowledge is power. May all cancer patients benefit.

Shedding Light On The Cancer Journey is now in E-book format, readable on your PC/Mac, Ipad, Android, Blackberry or Kindle. If you would like to learn more about other cancer-related issues such as :

  • troubleshooting pain control issues
  • the decision about when to stop chemo
  • differences between palliative care and hospice care
  • how to choose a truly excellent hospice
  • and the myriad of other considerations of cancer patients and their loved ones that most doctors never discuss

Shedding Light On The Cancer Journey is available on Amazon:  http://www.amazon.com/dp/B004T3331M The author speaks from from first-hand experience with  palliative care in the home when her husband was dying,  from 29 years of experience at the bedside of dying patients, as a trainer of new hospice volunteers in the area of contemplative care,  and from having successfully transformed several non-functional aspects of her HMO for the benefit of all future cancer patients.

Shedding Light On The Cancer Journey is a not-for-profit  labor of love.

Posted in blood clots, side effects of cancer, side effects of cancer treatments, Uncategorized | Tagged , , , , | 5 Comments

The simplest tool in my cancer comfort kit often gave the most profound results

My two most invaluable tools for pain control and comfort when I was caring for John at home were never mentioned by any of John’s doctors or nurses. Both were ultra low-tech and completely unrelated to drugs. The first I have already mentioned elsewhere in this blog– the hands-on ancient healing modality of Reiki. The second is so profoundly simple that mentioning it to others completely escaped my attention until this morning, when I applied it to myself as part of my own everyday early morning self-care ritual.

What I’m talking about is a tubular bag filled with rice or flaxseed that can be quickly heated in a microwave oven and applied to virtually any part of the body for instant, soothing relief for a wide variety of bodily discomforts. This is something that is readily available online or at most health food stores– but better yet,  very workable and emminently inexpensive versions can be easily created at home.

One of John’s most constant sources of distress was what he described as “a bone-chilling cold” that would come over him suddenly, causing uncontrollable shivering. Our solution was to drape the warm rice bag, heated for a minute and a half at high temperature in the microwave, along his solar plexus area from chest to groin. This provided a deeply comforting, slightly moist warmth that lasted for at least half an hour and almost always allowed him to drift off into a deep and peaceful sleep– especially when I added Reiki along with the rice bag.

This heated rice bag therapy was a Godsend for all kinds of aches, pains and cancer-related discomforts. It soothed headaches and helped tight muscles to relax.  John liked to drape it around his neck for the shoulder and neck pains that drugs didn’t seem to touch.  When the shivering and  bone-deep chill was particularly severe (as was often the case when he slipped into a cool bed), we used two heated rice bags, one along the solar plexus and the other between his legs. Within minutes, John was radically, visibly at ease. The transformation never ceased to amaze me.

Here’s a photo of my own homemade heatable rice bag:

This one is filled with rice, but flaxseed works equally well. The rice or flax can be mixed with herbal teas or with medicinal herbs, if you like. An even simpler variation would be to fill an extra-long sock with rice or flax and either knot the end or sew it closed. The strap handles are useful to hold the bag around the neck or over the shoulder. I added ribbon ties so that I can tie mine around my waist for soothing warmth on my decrepit back as I fix breakfast. Variations are limited only by your imagination.

Here’s a link for more information on how to make your own: http://www.cancerlynx.com/morericebag.html

For those who just don’t have the energy for do-it-yourself projects, you will find many ready-made products by Googling on “heatable rice bags”.

I know that this sounds ridiculously, almost impossibly simplistic, but I cannot describe the peace that this humble tool brought to my beloved, long-suffering husband. May many other cancer patients benefit from a similar peace and comfort…

Shedding Light On The Cancer Journey is now in E-book format, readable on your PC/Mac, Ipad, Android, Blackberry or Kindle. If you would like to learn more about other cancer-related issues such as :

  • troubleshooting pain control issues
  • the decision about when to stop chemo
  • differences between palliative care and hospice care
  • how to choose a truly excellent hospice
  • and the myriad of other considerations of cancer patients and their loved ones that most doctors never discuss

Shedding Light On The Cancer Journey is available on Amazon:  http://www.amazon.com/dp/B004T3331M The author speaks from from first-hand experience with  palliative care in the home when her husband was dying,  from 25 years of experience at the bedside of dying patients, as a trainer of new hospice volunteers in the area of contemplative care,  and from having successfully transformed several non-functional aspects of her HMO for the benefit of all future cancer patients.

Shedding Light On The Cancer Journey is a not-for-profit  labor of love.

Posted in caregiver to cancer patient, coping, end of life, Uncategorized | Tagged , , , , | Leave a comment

IV HYDRATION AND TUBE FEEDING AT THE END OF LIFE– PROS AND CONS

Let me be very clear from the start: the question of wanting either of these interventions was never an issue for John when he filled out his Living Will. My many years of hospice experience had made the choice a non-issue for both of us. I’d been a part of many medical discussions over the years on this subject, and had never heard any convincing arguments in favor of either tube-feeding or IV hydration.

A number of years ago, I participated in an excellent and compelling national teleconference for doctors and nurses on tube feeding sponsored by the Robert Woods Johnson Foundation, which presented some very strong, well-researched arguments against this practice. Plus, I had actual personal experience with two end-stage patients with feeding tubes, both of whom were clearly experiencing suffering as a result of those tubes and both of whom wanted them taken out.  More on that later…

There has been quite a thoughtful discussion on the colon cancer forum recently on this topic, revealing some fundamental misunderstandings on the part of some of the participants— which is the inspiration for this entry.  My goal was to examine once more whether there were any reasons at all why one might want to choose either IV hydration or tube feeding at the end of life.

Please keep in mind that this discussion applies only to cancer patients who are in the process of filling out a living will; the presumption is that the patient is terminally ill with days to live and is no longer able to advocate for themselves.

Fundamental to any consideration of these issues is understanding this key point in advance:

When someone with a serious life-limiting illness is no longer able to eat or drink it usually means that the body is beginning to stop functioning. It is important to remember that the person’s body is beginning to shut down because of the disease and dying process, not because of the absence of food and liquid.

Other key points highlighted by the National Hospice and Palliative Care website which most non-medical people are unaware of:

1. In order to make an informed decision about artificial nutrition and hydration at the end of life, it is essential to understand how the body processes food and fluids. (see points below)

2. Artificial nutrition and hydration do not offer the comforts that come from the taste and texture of food and liquids.  Doctors and nurses control when and how much will be given rather than the person. 

3. Providing artificial nutrition and hydration requires technical skill and has many serious risks.  Professional skill and training are necessary to make decisions about how much and what type of nutritional formula to give, how much IV fluid is appropriate, and to monitor for side effects.

 After a thorough search of the Web, the information I found was easy to categorize: 1. reasons for and 2. reasons against. There was vastly more published information on the latter category, so I’ll start with that.

ARGUMENTS IN FAVOR OF OPTING OUT OF IV HYDRATION AT THE END OF LIFE:

1. Fluid build-up in the lungs is common at the end of life. When the body is beginning to shut down and IV fluids are administered,  the body struggles to eliminate the excess fluid, resulting in more discomfort.

No IV means less fluid in the lungs, which makes it easier to breathe, with less breathlessness (which creates great anxiety) and less coughing (which is exhausting and often painful for the patient).

2. When the body’s elimination system begins to slow, IV fluid tends to build up in the tissues, potentially exacerbating pressure around tumors. Less pressure around tumors means less pain.

3. If the kidneys are still functioning, the excess fluid from IV hydration will be peed out, increasing the incidence of bedsores from damp skin and necessitating constant re-positioning of the patient in order to change bedclothes. Frequent urination when the patient can no longer get to the toilet or commode could necessitate the insertion of a catheter, which can be quite uncomfortable and a source of infection.

4.  Fluid build-up in hands and feet and in body in general is less without IV hydration.

5. There is a natural release of pain-relieving chemical as the body dehydrates. When the body no longer takes in food, appetite is dampened and a sense of well-being occurs. Anyone who has ever fasted for health reasons knows about this.

6. With dehydration, GI fluids decrease, limiting nausea and vomiting.

7. IV hydration and tube feeding can cause considerable discomfort for the patient.

     My first personal experience with this was with a 20-something year old with advanced cerebral palsy in a long-term care facility. Although technically not a hospice patient (because her parents refused to accept that she was dying and wanted EVERYTHING done to keep her alive) the distraught staff begged our hospice director to send a volunteer to sit with the patient.

The patient clearly did not want any of these uncomfortable tubes, as evidenced by the fact that she pulled them out herself multiple times each day, her face a mask of pain and anguish. She could not speak and could not advocate for herself; her parents controlled her circumstances and demanded standing orders that the nurses were to re-insert the tubes each time their daughter pulled them out.

My task was to sit by her bedside and do my best to try to get her to express her wishes in a clear way so that the nursing staff and doctor could document for the hospital ethics committee that the patient wanted the tubes taken out. I was never able to do that, despite the fact that all of us could clearly see the truth of her situation. She died a very agonized death several weeks later.

My second experience was with an elderly hospice patient with a very long list of life-threatening bodily failures, whose loving daughters had been talked into inserting a feeding tube her mother did not want by a misguided hospital doctor who assured them in would be in their mother’s best interests. The patient had lost the ability to speak and more recently, the ability to eat without choking. She put up with tube-feeding for several weeks, then made it very clear to her daughters that she wanted it out (it was causing all kinds of distressing problems). I was with her on several occasions when she was receiving a tube-feeding and can attest that it was NOT a pleasant experience for her; it was very stressful for the daughter who was in charge of administering it and that stress transferred over to the patient. The experience was the antithesis of comforting for both. The tube was removed, the patient entered into a state of blissful repose and died very peacefully about a week later.

8. Studies show that most actively dying patients DO NOT experience hunger even if they are eating very little. Here are the conclusions of one representative study published in JAMA:

In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.

9. Hank Dunn, a chaplain to terminally ill patients since 1983, in his book Hard Choices For Loving People, makes the following statement, backed up by 20 reference studies, meticulously documented:

 “The medical evidence is quite clear that dehydration in the end stage of a terminal illness is a very natural and compassionate way to die.”

OTHER CONSIDERATIONS:

If your goal is to die at home and you think that you want IV hydration and/or a feeding tube, please consider whether your local hospice organization will support you in this— many will not, unless there is a clear and compelling medical need.

Consider that you will have to go to a hospital to have a feeding tube inserted—this is a surgical procedure, NOT something that is done in the home.

If you actually find a hospice that will accept you with these interventions in place, ask yourself if your family is mentally prepared to do the hands-on care required for these devices, because:

The responsibility for maintaining venous access sites and IV supplies may be overwhelming for caregivers and it will be largely the family’s responsibility, not the hospice nurse’s.

ARGUMENTS USED IN SUPPORT OF IV HYDRATION AND/OR TUBE FEEDING AT THE END OF LIFE:

1. Dying patients are more comfortable with these interventions.

Please see above for 9 explanations of why this is not likely. Ask yourself: if dying patients are more comfortable with these tubes in place, why is it so common that these same patients pull the tubes out repeatedly?

As in the cases mentioned above, will the caregivers be more comfortable with these interventions, if they themselves are going to have to be responsible for maintaining them? If not, won’t their discomfort be ultimately communicated to the patient , thereby diminishing the possibility of a peaceful death?

2. Dehydration can cause confusion, restlessness and neuromuscular irritability.

These symptoms are common in the dying patient, whether they are receiving IV hydration or not.

3. Dehydration is a painful way to die.

See above #8 and #9.  Proponents of this argument use the phrase “dying from dehydration”, which is very misleading. In the circumstances we are considering here, we are talking about cancer patients whose illness has progressed to the point of causing complications leading to death– dehydration is not going to be the cause of their death.

Patients have asked me, “I’ve heard doctors and nurses say that dehydration as you are dying is not uncomfortable– but how do they know this for sure?” My response comes directly out of sitting at the bedside of dying patients for 26 years. Anyone who is experienced in being with the dying knows that patients show a wide range of facial expressions that indicate pain or discomfort– or peaceful relaxation. Patients tell us how they feel, in a very clear way, via facial expressions.

Furthermore, even though a dying person may not be able to talk, they are almost always–even when in a coma-like state– able to communicate clearly about whether they would like to have dryness of their mouth attended to. When offered oral mouth care with moistened mini-sponges or sips of water/ice chips, they will either open their mouth or clamp it tightly closed. Any nurse, doctor or volunteer who has had experience with dying patients knows this well.

4. Family members (and  patients themselves) may be fearful of “starving to death”.

See #8. There is a world of difference between dying patients who have ceased to eat because their body is shutting down and healthy individuals who are suddenly cut off from food (as in a famine). The latter will eat whatever they can find, intermittently and usually do not stop eating altogether. It is this intermittent consumption of low-grade food that causes the sensation of starving to death. Again, the terminally ill cancer patient is dying from cancer and its complications, not from “starving to death”.

5. Dehydration causes “terminal delirium”.

While it is true that dehydration may cause symptoms of delirium in healthy individuals, what is sometimes termed “delirium” in dying patients is far more complex than simply a lack of fluid. In fact, this terminology is often grossly misused and is a consequence of a lack of understanding on the part of medical personnel or inexperienced hospice professionals.

I could write volumes on this, but suggest instead that interested readers check out one of the best books on the subject of communication at the end of life: Final Passages, by Maggie Callanan. Profound messages from one who is dying are often phrased in very symbolic ways; it is a great tragedy when such messages are not examined carefully and consequently brushed off as indicative of  a “delirium” that needs to be treated with medical interventions.

There is a time and a place for IV hydration in the terminally ill, but that time is generally not in the last few days of life. Each circumstance must be considered on an individual basis. But as I pointed out  earlier, it will be very difficult to come to an informed decision about what you want at the end of your life if you have not reached an understanding about the many factors that shape that decision. Each of us will come to  different conclusions, based on our own unique life circumstances.

My sources for much of this information:

Dying Well: http://www.dyingwell.org/prnh.htm

http://www.hpna.org/pdf/PositionStatement_ArtificialNutritionAndHydration.pdf

http://www.ncbi.nlm.nih.gov/pubmed/7523740

http://journals.lww.com/nursing/Fulltext/2003/02000/End_of_life_hydration___benefit_or_burden_.26.aspx

I sincerely hope that this  has helped those who read it to understand some of the variables in the difficult end-of life decision-making process. May all of us live and die in peace, in the way that is best for us.

Shedding Light On The Cancer Journey is now in E-book format, readable on your PC/Mac, Ipad, Android, Blackberry or Kindle. If you would like to learn more about other end-of-life issues such as :

  • how to choose a truly excellent hospice,
  • differences between palliative care and hospice care,
  • troubleshooting pain control issues,
  • the decision about when to stop chemo, 
  • and the myriad of other considerations of cancer patients and their loved ones that most doctors never discuss

Shedding Light On The Cancer Journey is available on Amazon:  http://www.amazon.com/dp/B004T3331M
The author speaks from 30 years of experience at the bedside of dying patients, as a trainer of new hospice volunteers in the area of contemplative care, from first-hand experience with  palliative care in the home when her husband was dying, and from having successfully transformed several non-functional aspects of her HMO for the benefit of all future cancer patients.

Shedding Light On The Cancer Journey is a not-for-profit  labor of love.

Posted in end of life | Tagged , , , , , | 6 Comments

GRIEF, TWO YEARS LATER

A number of years ago, long before cancer was even a part of our vocabulary, years before John was even diagnosed, I took part in our hospice organization’s first Children’s Bereavement Camp. As part of the weekend activities, the children were to create their own grief masks as a way of expressing what they could not express in words.

In order to help them, the art teacher felt that we, the buddies and counselors, needed to experience the process ourselves, in advance. It was partially about understanding the mechanics of working with paper mache, but on a deeper level, it was an engrained part of the philosophy of our hospice that we cannot skillfully help others in their grieving process until we have worked through our own grief.

Just last week, while re-arranging and sorting through the external aspects of this new life of mine, I came across that grief mask that I created in 2 hours time so many years ago. I was struck by how still-relevant my symbolic representation of my grief at that time was to the way that I view my new life as a widow:

My life symbolized in a mask— the tears that I shed, the clouds that still drift across my emotional landscape, the awe-inspiring rainbows that accompany those clouds, and the reality of what I only dreamed of at that time: the unimaginable gift of how that grief has shaped me into a stronger, more resilient and deeper human being.

I must admit that, in my pre-widowhood days, I thought that the people who talked about carrying their deceased loved ones in their hearts forever had succumbed to wishful thinking. My thinking has been radically changed as a result of my own experience. Let me preface that by saying that John and I could not have been two more different people. Many friends found it rather amazing that we were married at all, let alone married for more than 40 years.

John was uber-pragmatic, convinced that everything could be understood through rational analysis; I was more drawn to the existential realms of the spirit. He was profoundly biased towards  a fundamentally conservative point of view; I was decidedly more liberal. If John had a mantra, it was “Shit happens”; he always mocked what he referred to as my “Magic happens” philosophy. When death began to enter our lives in the form of bad things happening to good friends, John was quick to offer support in his own unique way, telling them, “You can count on me to help in any way I can, with financial arrangements, wills, trusts— but if you need emotional support, Rachel is the one you need to talk to.”

Two utterly different people, John and I. Yet who I am today is profoundly, mind-bogglingly influenced by and intermingled with whatever that is that is the essence of John. I continue to be astonished (not really a strong enough word— just because it seems so preposterous, and yet luminously beautiful to me) by just how much I actually think like John now, 2 years after his death. When this comes up in conversation with dear friends, I ask if  they notice that I sound a lot like John— to which they chortle and agree  with the same incredulity that I feel.

This has been an incredibly reassuring and comforting revelation for me, one that leaves me, in many ways, not feeling nearly as alone and bereft as I might have imagined 2 years ago.  So for those who are not yet at the point where I find myself today, it is my fervent hope for you that you discover, as I have, that grief contains some hidden and breathtakingly beautiful gifts within its harsh exterior.

Posted in caregiver to cancer patient, coping, Uncategorized | Tagged , , | 1 Comment

Shedding Light On the Cancer Journey: the book

My dear and faithful readers:

As of today, over 61,000 people have read and hopefully benefited from this blog– beyond my wildest expectation when I started this project  6 years ago. Such strong support has led me to turn Shedding Light On the Cancer Journey into an E-book, which I’ve published on Amazon:

http://www.amazon.com/dp/B004T3331M

The easiest way for me to describe what this book is about is to explain what it is NOT about:

This book is NOT about how to cure your cancer. I don’t know anything about that– my husband John was not cured. Nor is it about being a cancer survivor, because John did not survive. He did, however, triumph over his disease– not by “beating it”, but by refusing to allow it to diminish his quality of life. He was not cured, but he was definitely healed.

This book is not about diet and exercise for cancer patients.

This book is not about how to become a cancer survivor. John’s physical body did not survive.

This book is not about alternative medicine for cancer patients– although it does discuss some complementary modalities that we found very helpful not only for easing the discomforts and pain of the physical body but for engendering a sense of deep peace as well.

So then, what IS this book about? Read what others who are walking down the cancer road have said about Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze:

You have created an incredibly valuable book. As a Professional Patient Advocate, I can tell you the experiences you are sharing through your first-person voice are amazingly common and your solutions are very direct and very accurate. This is information that only comes, unfortunately, from first-hand experience. Your book is like no other on the topic of any kind of cancer; you combine education with real-life emotion. This is “the bible” on colon cancer from the patient’s perspective. Your e-book serves a vital need. You are helping more people than you will ever know. Thank you. (Sheryl Kurland, Patient Advocate, Orlando Patient Advocates)

I cannot begin to tell you how helpful and meaningful your writing is. My father was just diagnosed with colon cancer stage 4 and I’m frantically searching for knowledge to help us with what lies ahead. Thank you for the priceless information (so far no one has even mentioned RFA to us or went through aspects of chemo you’ve pointed out) and the inspiration you’re so generously providing. It is such a help for people in our situation. (From the daughter of a colon cancer patient)

Your book has helped me to understand the pros and cons of the road ahead. (From Kaitlyn, a reader)

The web is packed with “inspirational” babble, “survivors” success stories and the like. I praise your effort in publishing a factual, clinical account of what your husband has been through. It helps a lot more than uplifting pats on the shoulder and gives me the chance to explore new alleys in the CRC nightmare my mother is facing. (Nuno Zimas, son of a colon cancer patient)

Perhaps you are wondering: why did this woman spend a year of her life writing down her husband’s experiences in such minute detail, when she will make no money whatsoever from the sale of her book? (see below for where any profits will go)

The answer is this: only someone who has been through the cancer experience can possibly understand the headaches and heartaches of this journey. Our doctors told us that we were the most educated and proactive patient/family team they had ever encountered– and yet, we were so often completely clueless about why our medical situation was unfolding in the way that it was. We often said to each other: if we can’t figure out what’s going on, what about all the others– those who are too sick, too weak, too tired to do their own research, unable to stand up to their doctors? What happens to them?

This book is a way of taking all of our suffering and dedicating it to the benefit of others with the intention of minimizing their suffering. Each person who purchases a copy of this book will, in turn, be supporting many others who devote their lives towards building the foundation for peace and freedom from suffering for all beings in this world (see below). $9.99 to benefit from this kind of  knowledge that can only be gained through hard experience– and to be benefiting others in return? This is  mutual support in action.

HOW CAN OUR EXPERIENCE BENEFIT YOU DIRECTLY, AS A PATIENT OR CAREGIVER TO A CANCER PATIENT? Here is just some of the information contained in this book that you will not find anywhere else:

An effective alternative to the long, drawn-out agony and uncertainty of chemotherapy when faced with liver or lung mets:

an approximately 2-hour procedure  which requires only an overnight stay in the hospital– with side effects that were, at worst, a week of flu-like symptoms. 

kill rate very similar to full surgery, effective for both liver and lung metastases.

 Detailed answers to every imaginable question about this modality, based on our first-hand experience and extensive interviews with every interventional radiologist at our hospital. My husband  was a world pioneer in RFA, in that he had 7 separate procedures– more than any other patient in the medical literature, according to our interventional radiologist.

Why  a PowerPort can make your life so much easier (IF you understand how it works and how to make the hospital hierarchy work for you) or become a source of frustration (if you don’t):

which medical personnel can access your port and where to find them

steps you should take BEFORE blood draws and CAT scans that your doctor may not know about (ours did not)

basics of good port protocol to prevent infection

A simple protocol for getting out of the hospital fast, including how to transition from  a pain pump to oral pain medication with a minimum of trauma. John printed this self-devised protocol out and discussed it with his doctors before every surgery. They were uniformly delighted to comply—never the slightest static.

Mind-altering drugs in your chemo cocktail– forewarned is forearmed

Facts about pain control that were never explained to us– these are points with which every patient/caregiver should be intimately familiar:

Trouble-shooting pain control: family members are the first line of defense

 How to recognize problems and prevent side effects before they occur    

Astonishingly effective alternative modalities

Simple in-home tools that really help to ease pain

Blood clots and IVC filters: what we learned the hard way and what every patient needs to know to avoid unnecessary complications

Changes in the patient’s mental status: warning signs and possible causes that can be reversed

Strategies for dealing with the unwanted changes that come with cancer

OTHER THAN FIRST-HAND EXPERIENCE, WHAT UNIQUE QUALIFICATIONS DO I HAVE TO WRITE ON THIS SUBJECT?

My 29 years of active hospice work with a hospice that is leading the way for contemplative care in this country have taught me how to be present with suffering. I understand very clearly that there is a time to “do” and a time to just be.

I have been mentored for 22 years in pain control basics by a very highly-skilled and experienced hospice nurse who knows much more about pain control than most doctors and actively uses her knowledge every day of her life. She also happens to be my dearest friend, which means that we talk about pain control issues as routine conversation.

Teaching how to be a compassionate presence to new hospice volunteers, nurses and social workers and new hospice volunteers for the last 15 years framed my determination to attempt the same task with my husband’s doctors and nurses.  My husband, who originally denounced this as wildly inappropriate and overreaching, was soon converted when he witnessed my somewhat astonishing success with his arrogant and distant surgeon.  Through our joint efforts, many doctors and nurses learned that opening their hearts actually led to better,  more effective medical care.  As a result of this, I have a working understanding of doctor-think.

My husband and I actually succeeded in changing three key flaws in the way medical care was delivered in our HMO in ways that made cancer treatments much less stressful for all cancer patients. My goal is to save all future patients from the time we spent and frustration that we encountered by sharing what we learned directly.

 This E-book can be read on any PC or Mac, Ipad, Ipod Touch, Blackberry or Android. Just download “Kindle for PC” or “Kindle for Mac” by hitting the button on the right side of the Amazon screen– the reader is completely free to install and takes  just a minute or two. No tech know-how at all required! And once you do that, you can take advantage of a fairly amazing bonus: Amazon is giving away free E-books every day on their website. Apparently their offering changes on a daily basis– check it out…

I will not make any monetary profit from the sale of this book. All proceeds will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world. Their constant prayers on John’s behalf and the gentle guidance of Tulku Orgyen played a vital role in John’s ultimately serene death.

You might also want to check out my new notecards, created with the same intention and the same goals: http://dharmakaleidoscope.wordpress.com/2011/07/15/dharma-kaleidoscope-notecards/

Posted in cancer staging, cancer treatments, caregiver to cancer patient, chemo toxicity, coping, doctor patient communication, doctor patient relationship, end of life, hospice, hospitalization, medication issues, patient advocate, side effects of cancer, side effects of cancer treatments, Uncategorized | Tagged | 2 Comments