I'm not sure how many young people are diagnosed with high grade gliomas – dangerous, malignant, brain cancer – every year in the US. A thousand or two, I believe. These people, in the thick of their lives, immediately reach out to the Internet to begin to understand what is happening, and why. They encounter information from medical professionals, medical web sites, the government, "crackpots", and well meaning individuals. It's hard to sort it all out, and in the first few days you have to make treatment decisions quickly. I know – I was there. I am not a doctor, so don't count on me while making your treatment decisions, but I might be able to help you navigate through all the people and information you will be seeing.
My partner, my love, Ann Simon, a 34 year old woman, was diagnosed with GBM in late May, 2002. She had nearly 6 months of a variety of symptoms, starting with headaches, and escalating to a weird car-induced disorientation, and then double vision. Ann's the kind of person who doesn't complain much, and didn't even mention the constant double vision to me for two weeks. We saw a variety of doctors in walk-in clinical settings without a diagnosis. It was only after seeing an eye-doctor for the double vision that the extreme cranial pressure warrented a scan, and a biopsy and diagnosis soon followed.
Ann was diagnosed at Alta-Bates Hospital in Berkeley, near
where she is a graduate student. After a few days of hospital stay and
a biopsy, we were released and moved our care over to UCSF, our local
brain tumor center. We started seeing Dr Michael Prados, the head of
their
neuro-oncology department. We moved quickly to a treatment path of
external beam
radiation, supervised by Dr David Larson, concurrent with low-dose
Temodar. Ann
had a remarkable positive reaction to that treatment. All symptoms
reversed, and she lived well throughout that year. The chemo course we
chose was a standard course of Temodar with a phase I trial drug
(OSI-774, aka
Tarceva). At about 8 months she started having a
strange symptom of her leg falling asleep, which - after another month
-
was tracked down to the cancer moving into her spine. A course of
radiation to the spine didn't turn the disease around, and she died in
February, 2003.
I write this as a care giver to increase the amount of knowledge about the processes of dealing with the hospitals and doctors and the disease itself. As a care giver, I have a different perspective on the disease than a patient. My background is engineering - software engineering - but I am also an amature musician. As an engineer, my job is often to assimilate vast amounts of imperfect knowledge quickly, and make decisions about practical matters. As a musician, I deal with expressing and channeling the feelings of the heart. This combination has stood me well in the course of this journey.
This document has gone through a few editing passes. I wrote most
while she and I were still fighting. At this point, over a year after
her death, I can finally look more clearly at that time and that
struggle.
Even though Ann died, her fight was strong and glorious. Her lesson - shouted from the rooftops - is not give up. Some people live, for reasons we don't yet understand.
These words, however, are my words. Ann was a writer and speaker, and
during the course of her disease I let her determine our path. Now, I
speak
for myself.
I have found a way to grow through this loss. In some ways, my life
is fuller and richer than it was with Ann, for I now understand
struggle and death in a way I never had.
We all must find a reason to live,
and live our lives as fully and comprehensively as possible. Often we
get waylaid in the day to day tasks that make up life. During this
time, all that of inconsequence will be stripped away. You can learn,
and your life grow richer.
May these
words help you along your path.
Doctors are, as a rule, notoriously bad at statistics. If you're like many Americans, you might be, too. To someone savvy about statistics, the words "confidence interval", "multivariate analysis", "selection bias" all have real meaning. It's hard, living and making decisions in a deeply uncertain world, but you'll have to do it. You'll never know if the treatment decisions you made were right or wrong. Whatever experience you've had making and living with decisions in uncertain situations will help you now.
General symptoms are:
A tumor will press on various brain structures. When that happens, any number of brain functions can fail, and fail in unusual ways. Other diseases, such as toxoplasmosis (a parasite), also involve growths in the brain, and are not cancer. A doctor up on their neurology can tell the area of the brain from simple neural tests, but in general the presentation is non-specific.
However, I will offer the following advice.
Use your family doctor,
general practitioner, or internist. We didn't have one, and few young
people I know
bother to find
and hold onto a family doctor. You'll need someone you trust to
organize your care - there will be many specialist.
Make sure you're seen by doctors. Residents and "clinicians" and "physician assistants" in emergency rooms and urgent care clinics will present themselves as doctors, but they're not. You want an actual doctor. Whenever you talk to someone who does a diagnosis and offers an opinion, you have every right to know their training and specialty. Ask specifically if they are a doctor. It may seem rude, but it's worth it. While this doesn't get you the right diagnosis, it gets you a better shot. You're always paying for a doctor, there will be a doctor's signature on all the forms, so request to see them.
Get a specialist. I don't know how to succeed – we failed at this. We lost 2 or 3 months because of this problem. In the greater Oakland and Berkeley area we were given a list of six or seven neurologists. Most didn't return calls in less than 4 weeks. Yes, I do mean RETURN CALLS, not make appointments - I received calls a month after Ann's diagnosis that were simply the neurologist's office returning the calls on the answering services. My only advice is to be very persistent. You may have to call your insurance company directly and make a fuss.
Get a scan. There are two general kinds of scans - MRI and CT. MRIs take longer, use more expensive equipment, and are more detailed. CT scans are a form of three-dimensional Xray, are much quicker, use smaller and less expensive equipment, and are less detailed Everything becomes clear with an MRI scan, and fairly clear with a CT scan. CT scanners are available in most hospital emergency rooms, take only a few minutes, and tell you whether you should get an MRI. On an MRI, tumors are obvious. A scan does not require a prescription. Recently (in 2002) there is a new business – "do it yourself" body scans. In these small offices, anyone can go in and get a scan. But be warned – scans can cause doctors to make diagnosis that aren't problems. This sounds like doublespeak, but the scans are marvelous tools. They show a variety of abnormalities which are not harmful. There are even theories that tumors can exist in healthy people, in balance with the body's immune system. Only the recent availability of inexpensive, high quality scans will tell us, in the future, the use of early diagnosis. See the "money" section below, but right now a brain scan, with a certified radiologist's report, costs about $1000 at these new places ($4000 is normal in a hospital). A friend of mine had a strange pattern of headaches, and got a scan and a clean bill of health. He's now much more willing to "wait and see".
A crucial point is that early detection is not clearly correlated with longer patient survival.
That having been said, the survival time without treatment is much
shorter than the survival time with treatment, and starting when there
are fewer bad cells must be better. There are treatments that can be
followed only at earlier stages, such as topical treatments (surgery
with adjuncts like Gliadel wafers). Also, external beam radiation can
be focused, and will do less damage to
the unaffected
portions of the brain.
Finally, the only chance you have at long term
survival with GBM is that you
manage to kill almost every single cancerous cell. It stands to reason
that if
you start treating while there's 1 million cells, instead of 100
million cells, you've got a better chance of getting them all.
It's
certainly true that if you get treatment while still mostly symptom
free your survival time will be of higher quality.
A biopsy will be ordered if
the scan shows abnormal areas. This will normally be a stereotactic
needle biopsy, which involves general anstesia. A small whole will be
cut in the skull, and a computer program will route the needle into an
area. Some tests will be done on the sample to make sure it's a sample
of the bad stuff. Recovery time for the biopsy will be a couple of
days. Although a neurosurgeon will do this work, the complicated part
is done by the computer.
A diagnosis will be rendered
by the pathologists who examine the tissue from the biopsy. These
results will be given to the surgeon, who will relay them to you. In my
opinion, this was a disasterous part of the inital process. The surgeon
will not be involved in your long term treatment, and has little
specialized training dealing with delivering this kind of diagnosis,
which wasn't even his work.
From this moment onward, there will be a mad rush of information and
choices. The impending sense of dread from the previous days will turn
into raw terror.
A truism to remember in Glioblastoma, and cancer
in general,
is that each individual cancer is different. The categorization
systems
for brain cancer are very coarse. Just because you have been given a
specific
diagnosis does not mean that you will act like the "average" patient.
The amount of variation in all cancers is so great that few people will
respond
or behave like the average. All good doctors that I have encountered
understand
this, and are very cautious when discussing statistics with patients.
That's
not because they're avoiding giving you bad news, necessarily – it's
because there's
a real truth.
The flip side of this fact is that most people
with this diagnosis will
die soon. How you plan for this reality is one of the fundamental and
central truths of your struggle.
Brain cancer is categorized several different ways.
Malignant cancers are those which can move through the body better, can infiltrate tissue better, and don't stay in a single lump. Malignant is a scary word, but although it is often the first thing that's said about any cancer, isn't necessarily the most important information. Benign brain cancers are generally treated through surgery, and shouldn't be a problem if one has access to a state of the art surgery center.
The primary tool of explaining how "bad" a cancer is is the WHO cancer grading system, which can be applied to all body cancers. That grade is from one (I) to four (IV), and the grade is primarily based on how fast the cancer grows. High-grade gliomas are grades 3 and 4, and GBM is always grade IV.
Metastatic is not a phrase commonly used with GBM because it's very rare. A metastatic cancer is one that has spread between parts of the body, for example a breast cancer that has spread to the skin. In general, brain cancers stay in the brain.
If the GBM has spread to multiple locations inside the brain, it is called multilocal. When it reaches this stage, it is usually considered that there would be no practical benefit from operating.
GBM and AA make up the two most common brain cancer diagnoses. GBM is grade 4, AA is grade 3. The treatments for the two are similar, with the primary difference being that AA patients tend to do a little better. There are a variety of other diagnoses, but these two make up over 70% of the diagnoses.
Most people get
these forms of cancer when they
are older –
60 or above. For adults, the younger one is, the better the prognosis.
Exact
figures are hard to find, but one study from British Journal of Cancer
looking
at the Glasgow population showed that all long term survivors (>6
years) were
under 40. This is very important to remember when you hear survival
statistics
quoted. However, if the patient is a child, the situation is especially
grim.
Most of the current treatments go after all cells that are still
growing, which
does not work well for children. All of my comments here are targeted
at
"young" adults.
Doctors will be making assumptions about what you want.
Most people want the same thing - the greatest chance at an extended
symptom-free life. Exactly which risks you're willing to take, and what
kind of life you want, can lead to slightly different treatments. Some
of these choices are horrible. Are you willing to take a 30% risk of
significant irreversible mental deficit in exchange for an unknown, but
slightly better, chance at beating it long term? When the first round
of treatment fails, and the second treatment fails, do you want to have
a few weeks being able to tie up your life, or do you want to keep
fighting against now truly impossible odds?
You'll get better treatment if you can look a doctor in
the eye and say, "Doc, I know I'm going to die of this disease. But I
want to try to get in a few more good years of living. If you can do
that for me, beat the odds by a little bit, I'll call this a success."
Or whatever the truth is for you.
I would do it, anyway.
The calculus seems fairly simple. If you're interested in fighting this thing, you need to be at a research institution. The simple reason is that they have drugs and knowledge that no one else has. I haven't seen any figures, but the major cancer centers must treat (or at the very least consult on) a majority of the high grade gliomas in the US. They have the greatest access to clinical trials. The names that I see come up most frequently in gliomas are:
MD Anderson Cancer Center in Texas
Duke in North Carolina
UCLA in California
UCSF in California
Johns-Hopkins in Baltimore
This is not to say that there aren't great people doing interesting work in other academic institutions. There's other names that come up after these, such as Sloan-Kettering, Boston Children's Hospital, University of Oregon. Each of these places seem to have different strength and philosophy. I've based a lot of my information by going to the clinical trials web site, and looking at the clinical trials offered at different centers. I would suggest doing this for yourself. You'll quickly see names and addresses of people to call.
The only thing I'd say further is that if you are seeing an oncologist local to you, and you think they're very sharp, continuing with them as your primary doctor is a good idea. They can get a national cancer center to consult. I know our Dr Prados consults on cases in New York, for example. You might get a high standard of care, yet have the benefit of the oversight and knowledge of an expert.
To me, being in a clinical trial is just the right
thing o
do. There is no cure among the known paths, so the best choice is to
take the
unknown path. At a larger center, you'll even have a choice of clinical
trials.
The drug companies usually pay for treatment in clinical trials. Some
people
are motivated by the altruism of clinical trials, but in this case of
fighting
for life, I find it hard to keep that in mind.
However, you don't have to take our path. The
known treatment paths can
extend life about a year. If you just want another good year, you might
want to take the standard treatment options.
Another factor is that I like academic
institutions. They still operate
as you expect a hospital to operate - for the patient, not for profit.
Sometimes they might operate for the best research opportunities, or to
educate their students, but at least they're not operating solely for
profit. They still have a strong element of pride and ethics. This
isn't to say that I didn't run into some great doctors in private
hospitals - I did.
The medical industry is like any other. It has
jargon and
terminology. A friend who understands you, and knows how to talk to
you, will be able to quickly provide whatever thoughts and assistance
you might need.
You probably either received a biopsy, or are about to get a biopsy. A needle biopsy is a common procedure which takes a small amount of material out of the brain for analysis. Needle biopsies are fairly straightforward these days, as they are primarily done by computer (stereotactic). A rig is used to hold the head in place, and the needle is driven by computer software based on the MRI image. This procedure may or may not require general ansthesia, but is fairly safe (one study stated 6% complication rate, 1% mortality rate, almost always from bleeding). A quick analysis is done to make sure that they've got part of the tumor, instead of normal cells.
The sample is frozen, sliced, and examined under a microscope. By looking at the number of dividing cells, the rate of replication can be determined. By looking at the morphology (shape of the cells), and by staining the sample with a variety of dies, a diagnosis will be reached. The pathology lab will issue a report, and the surgeon will deliver the diagnosis to you. Unfortunately, neuro-surgeons aren't known for their bedside manner, and they'll be your first point of contact for learning your diagnosis.
The pathology lab follows the same process as all medical diagnosis. They follow a process called "differential diagnosis", which is the language for "If I've got a choice between two things, how do you decide on which?" Doctors can't say "I don't know" – instead they'll say "This is more like X than Y, therefore the diagnosis is X", but not tell you that it's kind of like both. When looking at the shape of cells under a microscope (cell morphology), this is especially true.
Diagnosis can be uncertain. The most important
parts – blood
cancer vs. brain cancer – can be determined easily. Smaller issues,
like AA vs
GBM, may not deeply influence the treatment path. Typically, the only
way to
get a really clear feeling for exactly how the pathologist feels about
the
diagnosis is to go and ask them, face to face. Pathologists are not
used to
dealing with people, and our personal experience was that they often
welcome
being able to see people.
So you've got a simple needle biopsy. This makes
sense, because you don't know what the exact cancer type is
yet.
There are two further choices, however. When you go in for the biopsy,
you can
try to clean out as much as possible of the tumor body. This can make
sense if
the tumor is easy to get at, and if it's localized. The common course
of action
in America seems to be go for the biopsy only, at first.
This is backed up by data that shows that patients
with GBM do not live
longer when they have surgery. Somewhat confusingly, people who can
have surgery live longer, but this denotes that the cancer is caught
earlier.
There are further tests that can be done besides
the common
tests that lead to a diagnosis. First is a procedure called
"chemosensitivity testing". The general idea is to see which
chemotherapy agents the tumor is most susceptible to. While this seems
to make
a lot of sense, chemosensitivity testing is currently in ill favor. The
reason
seems to be that different labs have different, proprietary tests, and
there
have been no large-scale trials to determine the clinical effectiveness
of
following the results of the lab tests. Since these tests are
proprietary, they
don't have the kind of clinically tested statistics. If you are
interested in
this
course, you have to choose a lab and have your samples
overnight-shipped to the
lab immediately after biopsy. Even 24 hours is too late. We didn't take
this
route.
Finally, there are tests for certain proteins.
Many of the
new therapies are suspected to work better if certain proteins are
overexpressed in the tumor. For example, an EGRF blocker would make
sense if
EGRF is in abundance in the tumor, which is true of 40% of GBMs.
However, it is
currently not common to test for these.
Second opinions – consults – make sense in several
circumstances. If you are choosing a surgeon, you want to get a good
surgeon, one
with the skill to succeed. If you don't trust the surgeon you have been
assigned at a hospital, you can ask for a consult. But how do you
know the
skill of one over another? A general practitioner or family doctor can
help
guide you in this selection. In a hospital environment, an attending
physician
is responsible for you. However, you can't just ask if a particular
surgeon is
incompetent. The phrase doctors use is "Should I ask you for a consult
on
this particular surgery?" at which point the attending physician can
say
"Due to the particular nature of your case, I think you should ask me
for
a consult." or they can say "I have complete confidence in Dr X in
this matter." The attending doctor hasn't "ratted out" a particular
surgeon, and can say with a straight face that you asked for a consult,
and they
had no choice but to provide one.
Second opinions make perfect sense when it comes
to lab
results. If you transfer from one care group to another, the pathology
lab
within the new care group will usually go back to the original biopsy
slides
and reexamine them. If you're unsure of the diagnosis, you can take the
slides
elsewhere and ask for a new pathology report. My personal experience is
that re-questioning the pathology report is not often done. A regional
cancer center often focuses on research of a disease, not on pathology.
Treatment decisions are a bit of a different case. In any field, there is a hierarchy of doctors, from regional medical centers, to large city medical centers, to research centers, to research centers that specialize in the disease in question. At each center, there will be again a hierarchy, from residents up through the doctors that have been working there a long time.
I found this to be the most bizarre and difficult part of our travel. I can only hope you have access to someone you trust deeply who is a doctor and can guide you through the thicket of problems in communicating with doctors.
By law, someone with a medical degree can only discuss treatments that are known to work. While there is some slop in the terms of 'known', this generally means publishing in a peer reviewed medical journal. Talking outside of the strictly known can get a doctor's license removed, or at the very least a malpractice suit. Dealing with cancer patients can be especially difficult, because they're under stress and may blame the doctor later. If you want more information, liberally sprinkle your talk with doctors to include statements like, "I know very little is known about the positive effects of a given treatment, but in your opinion…"
In order to avoid the legal responsibility of difficult decisions, the common current doctrine is that doctors must present the patient with all relevant information, and a decision is made by the patient. This sounds great, and certainly is better than a doctor deciding everything. But in practice, this doctrine is problematic at best. We have highly trained doctors so that each of us won't have to learn medicine. To place the burden of life and death decisions on the shoulders of lay people doesn't work on a practical basis. Sometimes it seems that the doctor presents you with a choice that's not really a choice – they present what they believe in, and don't mention any opposing points of view. Later, you might find that there a greater difference of opinion on different points than the doctor represented at the time. The greatest benefit of this doctrine is that as a patient, you can continue to say "I am not satisfied with the amount of information I've received", and they're give you more. You can also come pretty close to demanding your treatment option (within the limits of FDA rules, and within the limits of what a particular doctor is comfortable with).
I've encountered situations where I didn't feel that I'd gotten quite enough information, and was unable to get more. Sometimes, the real question I wanted to ask was "What do you recommend?" This is a great question, and they have to answer it for you (on the doctrine of full information exchange.) Sometimes the situation will involve a bit of pushing, and sometimes you won't succeed.
A good doctor is weighing a huge quantity of information, certainties and uncertainties. Cancer has many unknowns, and high grade gliomas are especially uncertain. Treatment options have risks – big risks. Some chemotherapy regimes have fairly terrible risks, like a substantial amount of "treatment induced mortality". You need to tackle the hard question of how much risk you're willing to take, without really knowing what the risk looks like. When someone tells you there's a "substantial risk of abstract reasoning deficit", how can you know if you're willing to live that way or not? You do need to make some kind of stab at it, as hard as it's going to be.
The basic risks you're going to be facing are the risks of surgery, the risks of radiation therapy, the risk of chemotherapy, the risk of taking unproven drugs, and the risk of not doing enough. It's going to be a fairly snap decision, and will be deeply influenced by the doctor.
Right about the time that Ann and I started staring into the reality of risks and benefits was when I discovered some of the subtleties of communication as a caregiver. At first, it seemed simple. Ann wanted to know everything, and of course I should tell her everything. There are never secrets between us. As we started living with the diagnosis, we started to agree on a division of labor. As someone who can master technical facts quickly and has a grasp of chemistry, anatomy, and statistics, I would do all the medical research, and present summations for her, and answer questions. She didn't couldn't spend weeks pawing through a mountain of research papers, so I would, and be available when she needs to ask for clarification and advice.
The subtle point was that she felt that she needed to be isolated from some of the knowledge for the simple reason that she needs to keep up hope. She can't be always butting into those statements that start off any research paper about high grade gliomas – "With the treatment options that are currently available, prognosis is poor for a vast majority of the patients." Yet, she still needs to know everything, in order to be faced with how serious the situation is, and be able to make the decisions at the right time. Often, I've wanted to take the doctor out of the examining room, and say, "Look, Ann doesn't want to hear this from you, but you'll have to tell me, and I'll tell her in the way that's best." That opportunity doesn't come up, though. I get depressed reading the medical literature. There are few bright spots in the research, so far.
I sympathize quite a bit with the doctors now. Ann and I have had a number of very serious discussions about exactly how she wants to slice this problem, where she wants various lines to be drawn, what level of detail she wants to know. You need to have that discussion, and figure out where to draw that line in your own relationship. In our case, there was no obvious
I've heard a lot of cancer stories now. I don't know if the rate of cancer is increasing, but it seems that so many people have family and loved ones who have confronted cancer. Most cancer happens to older people, and isn't quite as tragic. I can't imagine cancer with children. A friend of mine had cancer happen to his two year old son, and I can only barely imagine.
As a friend, some of what you can do is just be there. There will be times of abject fear and pain, and that load should be shared. You'll feel helpless, and we're all helpless before cancer like this. Just stay in there. Call as often as you can. Listen, more than you speak. Just saying, "That's horrible, I'm so sorry." has a positive impact. One good friend said that while dealing with his young son's cancer, he eventually came to hate the good natured people who would relentlessly talk about "Did you read about this?" and "Did you think about this?" when all he wanted was to be sad.
Hospitals in America are divided into two general models. One model is how we commonly consider a hospital: a monolithic institution where doctors work. You get admitted to the hospital, and you're seen by doctors who work for the hospital. The second, newer, model is of the hospital as a place of business of independent contractors. In that case, only the nurses and cleaning staff work for the hospital, and everyone with a license to give an opinion is part of an independent company. This will be covered more completely in the section on money, but it has an impact on communication. When a hospital is simply a place of business, doctors are independently liable for any mistake, as opposed to the hospital itself. Doctors become even more cautious. In the old hospital system, my experience is that doctors aren't motivated as much by fear of individual retribution, and work together for your health. Old style hospitals are found in teaching hospitals, and in our area, the Kaiser HMO system (which owns its own hospitals).
This is a hard question. Doctors, like any professionals, are reluctant to say that a particular colleague is inept or dangerous, yet a few of them are. A clear statement of that sort can lead to direct legal action, as well as sanctions within their business. The reality, however, is that there is no impartial central registry for doctors. Statistics are not kept on the outcome of a particular doctor's patients. A recent New York Times article on mammography detailed that some regional experts who analyzed thousands of mammograms per year were missing 30% of the positive mammograms, where a good doctor would miss less than 5%. In general, doctors are highly trained and motivated people who are doing a great job at healing. Similarly, in any large medical institution there's one or two doctors that probably shouldn't be treating anyone, and you certainly don't want them treating you.
I need to be clear and differentiate between differences of opinion, and differences of competence. When we were talking with our surgeon about the biopsy, he said it was clearly the thing to do. After the biopsy, he broke down and said there was a controversy in the industry, and he generally chose to go in for the minimal amount of tissue, while the other choice was while you're going in, get as much of the cancer out as possible. This is a tough choice, and different competent doctors can have different opinions. I'm talking about something else -- rank incompetence.
You want to make sure that your pathologist, or surgeon, or oncologist, is at the very least excellent, and certainly competent. As consumers in the modern world, all of us are commonly in situations where we have to make decisions about technical matters we know very little about – buying computers, cell phones, even cars. In this case, the stakes are immeasurably higher.
The short answer is you have to find someone you trust, and get them to guide you. It could be anyone in the system, even a nurse that's been around a long time. You may have a family doctor, or a true friend that's willing to tell you the "inside scoop" of the doctors you are dealing with.
If you have an exceptional long-term relationship with a doctor, you can ask them straight, but with doctors who you perhaps have just met but have a good feeling about, you might have to be more subtle. You have to give the doctor "plausible deniability". One strategy that a doctor taught me is words like the following:
"Just like you, we're only concerned with getting the best possible outcome. Dr X has been assigned to handle this portion of our treatment. Should I ask for a consult on this matter?"
At this point, the doctor you're asking can say
two things. They can say "In this situation, given the complexity of
the case, I
think you should request a consult". This generally states that he
doesn't
think that the doctor can handle the situation, but can fall back on
the
argument that the case was just not to the strength of the doctor in
question,
without specifically stating that the doctor isn't competent. They can
also say
something like "I have every confidence in Dr X in this situation".
This exchange allows them to give you the information they want to give
you, but without the complexity of possible legal hassles. It also
shows that you know the code, and can be trusted to use the information
wisely. As is common with coded communication, if too many people know
the code they change it - by the time you read this, they might use a
different interaction.
In a hospital, one doctor is designated the attending physician. The role of the 'attending' is the doctor who looks out for you during your hospital stay. In broad strokes, they are legally responsible for your entire experience. Unfortunately, you don't get to choose your attending physician in an emergency situation, but if you schedule your stay ahead of time you are likely to have greater choice. In any case, you should use your attending to check the opinions of other doctors, and to get an overall sense of who is doing what. There are times when you'll be just waiting in the hospital, not really knowing what you're waiting for, or what will happen next. It may seem that everything's out of control. You should always be able to get in touch, nearly immediately, with your attending, and ask them what is happening. In our hospital stay, the attending was a "group" consisting of two neurologists, and one of the two was on call at any given time.
When deciding on the drugs to take, a doctor looks at a set of information and sifts through the desires of the patient, the information about particular medicines, applies their own intelligence, and comes up with a recommendation. You can ask another doctor, and get another opinion. Surgery is different. A plan can be made, but the outcome becomes dependent on the skill and training in a person's fingers. At that point, you have to do "due diligence" in researching the background of your surgeon, then stand back and trust them.
Doctors of different specialties get stereotyped. In my experience, there's quite a lot of truth to those stereotypes. After the long haul of medical school, people have strong insights into what they want to do for the rest of their career. Knowing these stereotypes gives you a leg up when confronting a new doctor.
Surgeons are stereotyped as arrogant, poor communicators.
Oncologists are cheerful and put the best face on situations - but commonly have the worst news to give you.
Emergency room doctors have a broad range of experience and a moderate bedside manner, but will often put things bluntly. GPs or internistsare similar, just not as quick.
Radiation oncologists are sharp, can-do people with a particular technology they believe in and little understanding of the complexities of anything else.
Pathologists are bookish technicians who
you rarely
see.
rock stars
are the researchers at some institutions who have built up a huge
reputation. They are hard to get ahold of, and it's not clear that they
have any corner on the truth.
There's one oddity in dealing with good doctors that no one ever mentioned to me. The best doctors have a huge amount of options and opinions and thoughts for any given situation. They don't want to confuse you or upset you with information overload. As a first cut, they tend to stick to simple facts. The diagnosis, and what they recommend. Then they stop, look at you, and there's this big silence while you process the information and round up some questions. Over and over again, you'll find yourself in situations that you didn't prepare for, so short on knowledge that you'll not even know the questions to ask. Doctors sometimes use this long silence as a crutch, or as a way to avoid talking about information they consider confusing or difficult. For example, I've asked doctors what the side effects of a drug are, and had them come back with a list, then stop, and give me the long silence. I've learned that I have to ask, "Is that all the known side effects?", and sometimes they will continue listing more side effects. A common strategy is to go into any doctor's meeting with a list of questions, and to make sure each is answered to your satisfaction. However, my experience is that you'll sometimes be hit with information that you just haven't considered. My advice is to start building up a set of stock questions that work in a variety of situations. Examples that I use now are, "Are there any questions I should be asking you?" "What side effects do you usually see?" "Are the side effects reversible?" "How often have you performed this procedure?"
While we'll never know whether the treatment option we choice was the best, we had a very different opinion from the two radiation oncologists we saw. The first was likable and direct, persuasive, put presented a black and white choice: you need to take 60 Grays of radiation, whole brain. There would be a good chance of permanent damage, but it was a risk to be taken. Our second doctor, who had trained the first, was more thoughtful, and suggested going to 30 grays, and taking an interim scan. If the treatment went well, we could reduce the size of the radiation exposure so that there would be no risk of damage. If the radiation had no effect, maybe we should just do less. This is not a common treatment option, but given Ann's young age and the terrible effect of radiation damage to a person who has lived all their life depending on their brain, it seemed like a good option. Our second doctor was actually something close to shocked that the first doctor had suggested a straight treatment of 60 grays.
On a gut level, I felt a strong tug toward the first doctor, until we met the second doctor. By pulling the stops out, at very least we feel we've done more.
Most of the young people I know are not used to the idea of having a family doctor. They've been told over and over again that they "should" have one, but the practical situation with American health insurance is that trying to see the same doctor every year is quite difficult. You change jobs, or your job changes insurance companies, and your old doctor isn't covered. You only saw them once or twice, so you don't mind seeing a new one next time.
Now is a good time to get a constant doctor in your life.
This can be a hard. Our story was one of visiting
3
different doctors in clinics, and each time being told the headaches
and
stumbling and double vision were probably nothing. It was finally an
optometrist who found the problem - an appointment we got when a
clinician wouldn't venture a guess about Ann's double vision. Time from
first
symptoms to diagnosis was about 5 months. It has occurred to me that in
some
cases the diagnosis was bungled.
It would be very easy to be bitter about these
problems. In reality, this is just a hard disease to diagnose. It's one
of my reasons for writing this and posting it to the web. It might
really reach only the hypochondriacs, but for the rest of you, the
message is get a scan.
The first point about money is that you'll be spending a lot of it, but there are a variety of tricks you can use to bring the cost down.
It's not just the fact that you probably don't have $50,000 or $60,000 to cover the first 6 months of service, it's the fact that insurance companies get a different deal from folks who walk in off the street. The doctors bill at a certain rate, but in order to be in the PPO they agree to accept whatever the insurance company gives them. The insurance company is negotiating on your behalf, and they get a much better deal. Typically I see a bill come in, and the insurance pays no more than half – often much less, as low as 10%. And that's it. You don't pay any more.
I have no idea about this.
First, remember that the cost is to the insurance company, not you.
One night in a hospital - $10,000 / day billed, $1,500 paid
5 days (one month's worth of Temodar oral chemo) - $3,500
One fairly limited blood test - $250 to $1000 billed, $50 to $100 paid
One MRI scan - $4000 billed, $2000 paid
Biopsy - Surgery, anesthesia, follow up care - $15,000 billed, about $3000 paid
One ambulance ride of 7 miles - $350 billed, $350 paid
So you can see that without insurance coverage, just about every time you talk to anyone will cost you a few thousand dollars, and you're not likely to bargain with them up front. I just don't know what would have happened, without insurance. The bills just for the first 5 days after diagnosis would have been roughly $100,000.
If the caregiver's work provides insurance, and
you're eligible
to sign up for it, you might have to wait until a certain time of year
(open
enrollment period). It's likely you won't be able to change anything
about your
plan until then. My company was very open about the insurance, with no
preexisting condition clauses and domestic partner support carried by a
single
affidavit. Still, I had to wait 7 months for that period to roll around.
In retrospect, signing Ann up on my policy didn't work out well. Ann
was then double-covered, and the insurance companies disagreed about
who would be primary and who would be secondary. The new company,
Aetna, was a complete jerk, and only when UC Berkeley threatened legal
action did they move quickly. The confusion was large, though, and
would have been avoided by just keeping a single insurer. However, the
risk we were covering was that Ann's disease would last a long time,
and she'd want to get out of the UC insurance. We would want to avoid
the gap.
Getting involved in clinical trials can vastly reduce your expenses. Our experimental drugs are free, our scans are paid for by another study.
The one truism that I've heard over and over is
that a good
theory rarely translates into a good treatment. High grade gliomas have
had
many therapies tried, many that work in test tubes and mice, and don't
pan out
in large scale human trials.
The road to a cure is littered with great
theories. You can go down to the medical library and read paper after
paper from even a few years ago where the theory sounds good. Animal
studies sound good. Then they try it in people, and no dice. A good
theory doesn't make a good treatment. This is especially important to
remember when dealing with the "science" of "non-traditional"
treatments.
The way medicine works is that researches have to come up with a "cookbook" therapy. Receive this diagnosis, take this course of action, get cured. They want to make a bullet-proof system so that any country doctor can successfully treat the disease. Any difficult diagnostic issues should be resolved with a clear-cut lab test. The current pattern is that a recommended treatment should work for a good slice of the people with a particular diagnosis (50% or more), otherwise research will be ongoing.
In cancer research, you'll see that a particular treatment may have a positive effect for 10% or 20% of people. This is considered a failed treatment, and will be abandoned. A promising treatment may be combined with other treatments to get the odds up, as long as it could be theoretically seen that the chemistry of the drugs won't clash with each other.
Yet, if you're in the 10% for whom that treatment will benefit, you may want that therapy. If you have 5 drugs that each cure 20% of the cancers, and it turns out that they each cure a different 20%, the only remaining research would be to figure out which people to treat with which drug. Tighter diagnosis of different forms of cancer is an area for research. One issue is that fine grained diagnosis is harder to trial, because usually you enter a trial after receiving a diagnosis. Another is that diagnostic procedures have different patenting issues than drugs, and a diagnosis is only done once, limiting the amount of money someone makes. Drug companies are starting to wake up and fund the diagnostic side.
The difficulty in any cancer treatment is to target the cancer cells. The first and most obvious way to target the cancer cells is with surgery. Surgery is, in some ways, the most obvious treatment path, as the risks can be clearly stated. The risks are not getting all the cancer, and hurting parts of the brain.
Cancer cells are your own body's cells that stay in a neoplastic state instead of differentiating into a particular cell type (such as a blood cell or a skin cell). In the neoplastic state, the cell does no good for the body. To kill all neoplastic cells interrupts all cellular division in the body, which hurts all sorts of processes, such as the regeneration of the liver, the creation of blood cells, and immune system cell replication. In adults, many cells in the body are at statis, and don't need to replicate, they just need to function.
There are two general methods for going after all neoplastic cells. One is chemotherapy, and the other is radiation. Chemotherapy involves drugs that interrupt the replication of all cells by going after general replication systems, such as DNA duplication. Radiation involves inducing DNA errors through "hard" radiation. The theory is to induce enough errors that normal cells can't replicate, but can continue to function. The goal of radiation is to hit that "sweet spot" and cause fast-replicating cells to die, but once you do, that area of the body can't have any more radiation in your entire life.
There are two newer theories of treatment. One is cellular communication mechanisms. Cells build certain proteins in order to communicate with neighbors. For example, if a cell needs more blood flow, it can express a certain protein which will tell nearby cells to extend the blood vessels. These proteins are typically involved with growth and/or action of cells. It is considered likely that many cancers express certain proteins in order to expand and grow. Blocking those proteins may slow a cancer to the point where the body's natural mechanisms can overcome it. The general benefit is that these therapies can be very light on the body, as they don't effect all cellular replication, and the immune system can continue to function at full strength. The problem is that it seems various people's cancers use different mechanisms.
Gene therapy is a completely different attempt at curing cancer. In this theory, a retrovirus (similar to chickenpox or AIDS or Mono) is introduced to the body. Retroviruses are special in that they can insert new DNA into all the cells in your body. This added strand of DNA can be designed to remove or alter or repair certain sequences. At this point in history, this is "James Bond" medicine, messing with the DNA in your cells. The effectiveness of a given therapy depends on which gene is targeted, and what the replacement gene is.
We were not candidates for surgery, so my experience in this area is second-hand. If you ask enough doctors, it's possible to find a surgeon to operate on just about anything. However, there are studies that show that after the tumor has spread, surgery might not be beneficial. There's even evidence that shows that surgery is not beneficial at all (on average) for GBM patients. Being eligible for surgery means your case isn't so bad, and the common wisdom is to do it, and do it quickly. Any subsequent therapy will work better. However, glioblastoma in specific is highly invasive, so it is always sending "tentacles" down into the healthy brain. It's also mobile, spreading to other parts of the brain. From post-mortem studies, we know that those cells are there even if MRI can't detect them, and are where a surgeon can't reach them.
Surgeons have an incredible array of tools now. They have real-time "MRI Wands", which can show on a monitor exactly how close the target areas are, and allow the guidance of the knife more accurately. Pure stereotactic systems exist, where everything is driven by computer. In one paper, Dr Prados stated that with modern tools, any surgery could be done. The primary issue is the benefit, if the disease is multilocal.
Gamma Knife is technically a radiation therapy, but the radiation is so focused that it can be considered an alternative to surgery. There are over 200 point sources of radiation, and they focus on a single point. The radiation fries whatever is at that point. Gamma Knife is typically reserved for the brain, where deep surgeries are difficult, but can be used anywhere in the body. The negative is that the surgeon can't have a look around, can't take biopsy samples, and can't use topical therapies (brachytherapy (radiation chips), gene therapy, Gliadel wafers (chemo chips)).
There are currently a fair number of Gamma Knife machines in America, although they're not exactly common.
The reality is that glioblastoma almost always (over 95%) recurs in the tumor bed, or original site of tumor. This has lead to treatment strategies where the surgeon can leave something curative at the site of the tumor. The first effort was made with radioactive iodine and cesium chips, to basically be a form of long term, focused radiation therapy. While this therapy is commonly used, the long term data on it has not been especially promising. A very promising area of treatment is called Gliadel wafers. Giadel is a form of long-term release CCNU, a very effective form of chemotherapy. By staying at the site, the CCNU poisons the tumor bed, but doesn't have a harmful effect on the bone marrow. It's even somewhat unknown why this treatment works as well as it does, because it's likely that the Gliadel effects only 10% of the cells. The experimental numbers of this therapy are currently very exciting, but work is ongoing. The third major form of therapy is gene therapy. Retroviruses attack cells at the point of replication (mitotis), thus target only growing cells. The retrovirus inserts DNA into the cells it infects, but has had genes omitted so the infected cell doesn't create more of the virus, thus limiting its effect to the area where the therapy is inserted. This general technique has huge promise, but depends on exactly what the inserted genes try to do. One recent trial involved adding genes that express a certain surface protein that AIDS infected cells express, then using anti-AIDS drugs. In general, these forms of gene therapy haven't yet panned out, but are likely to when we understand more about the human genetic system.
Gliadel recently was turned down by the FDA as an
approved treatment. After reading so much positive research out of
Duke, it was hard to see why. The data published by the FDA was much
more negative, showing positive responses in only a small number of
patients - hardly significant. The cost of the drug is high - about
$10,000 for the surgical treatment. I guess I would ask for it if I was
having surgery, but knowing what I know, I wouldn't have surgery for
this kind of cancer.
Radiation therapy hasn't changed much over the last 20 years. The head can take a fair amount of radiation, because the neurons in the brain don't replicate much in adults. The standard limit of radiation is 6000 units (centi-greys, or 60 Greys) over the entire lifetime. Current data suggests that effectiveness against the cancer goes down dramatically after 50 Greys, and damage goes up badly after 60 Greys. That's the sweet spot I mentioned before.
The rule of thumb for radiation therapy is that one-third of people have clear shrinkage, one-third stabilize, and one-third are not helped. It is not known what is different about these sets of people, but there is work ongoing to examine certain naturally occurring DNA mutations to see if they effect the outcomes. There are several DNA repair mechanisms. If you have a natural mutation where one or more of these are knocked out, your radiation might be more effective, but similarly, the healthy tissue might be more effected, leading to permanent deficits. The chances of permanent deficit are very real, and must be discussed with your doctor.
A few years ago a technique called "hyper fractionalized radiation" was tried. In this technique, the patient is treated multiple times per day, instead of once a day, but with the same dose per day. Although this sounded good on paper, it didn't turn out to have any clear clinical benefit. It was easier on the healthy tissue, but also easier on the cancer.
Radiation can be focused to smaller regions. By also hitting a smaller region from multiple angles, the healthy areas will receive a smaller dose. For example, by hitting a spot in the middle from the front and from the right, the healthy tissue will receive half the radiation. This technique is called "conformal mapping" or "coning down".
Radiation is annoying, but fairly easy. The process is that a mask will be made to hold the head exactly in place. A CT scan will be taken with that mask and that table to determine the exact target areas. The angles will then be computed. This set-up process is called a "simulation" After the simulation is done, the patient arrives every day, gets strapped into their mask, and spends a minute or so receiving the radiation dose. There's always a certain amount of waiting for your machine to be free, but you don't see a lot of other patients. Since radiation is the second treatment tried (after surgery), patients tend to be healthy and in good spirits.
The general course of treatment is to decide what part of the brain you're hitting at what time, and then go through the entire course of treatment, and get a scan in 8 weeks after it's all over. Taking scans during the treatment is not common, but our doctor recommended it given our young age.
Radiation often includes some form of concurrent treatment. Chemo treatments can be given, on the theory that this is one of the best chances to get as many cells as possible. Protective treatments can also be given, to reduce the chances of damage by the radiation. Chemo during radiation is fairly standard, and we went with a half-dose Temodar regime. The literature on this exact course is based on a single paper that has been contested on a number of grounds, and it could be that other chemo regimes (BCNU, CCNU, Procarbazine) are as effective. We were not offered and did not investigate any of the other options, but even now there are a variety of studies available for drugs of this sort.
There is a single paper out of Japan about
hyperbaric
treatment, where the patient is put in a high pressure oxygen tank so
that all
the cells absorb more oxygen. That seems to have an effect of
intensifying the radiation, based on some kind of theory that rapidly
dividing cells will consume more oxygen, and then be more damaged when
the oxygen has an electron ripped loose and becomes a free radical. To
my knowledge, this treatment is not in common use, and I don't even
know of an American trial of the technique.
This is a treatment pioneered and used widely in
Germany.
The general theory is that intact tumors have much cruder methods of
dissipating
heat than healthy tissue, and can't take elevated heat levels. There
are a
number of general tools used in hyperthermic treatment, but the most
common
resembles a body-sized microwave oven. For the head, I understand that
holes
can be drilled and probes implanted in the brain. I know one person in
Germany
who had very positive results with this treatment for a body-based
cancer, but
I also talked to our radiation oncologist, who had run studies and
published
papers using hyperthermic treatment, and did not speak highly of its
effectiveness for brain tumors. We decided not to take this direction.
Getting recommendations for treatment in the medical
community is like pulling teeth. No doctor wants to "rat out" another
doctor. However, how will you know which doctors are good, and which
are bad, without some kind of information?
Alta-Bates is a very good hospital for a non-research
institution. I prefer them greatly to Summit or Highland in the East
Bay. With few exceptions, every person I ever dealt with there was a
highly professional and competent person.
One exception with Alta-Bates was our first attempt at
getting diagnosed. Ann had terrible headache pains, and was rolling on
the floor screaming. In the morning, she and I went down there. We were
waiting in the ER for an hour, and I finally decided to go out and get
some juice at the Whole Foods. When I came back, Ann was gone. She had
tried to call me on the cell phone, so I knew she was in there, but I
couldn't call her because of the hospital's prohibition on cell phone
use. The nameless security guard refused to tell me where she was, and
threatened to have me thrown out of the hospital - in direct violation
of hospital policy of one visitor per patient. The clinician that Ann
saw diagnoses Ann with benign positional vertigo, a complete crock. Ann
never saw a doctor. I suspect that Ann may have played down her
symptoms, as I often saw her doing later.
One minor mess-up we had at Alta-Bates was the mislabling
of Ann's biopsy report under the name "Singh" instead of "Simon". This
is apparently common, and easy enough to straighten out - there was
only one brain biopsy performed that day.
I hesitate to put Mr Broffman in a list of doctors. He
bills himself as a chinese herbalist, which is technically true, but he
didn't fit any of my expectations of a chinese herbalist. He's a young
jewish guy, not a doctor, and he was able to introduce me to a variety
of medical papers and concepts. He gave capsule summaries of all the
oncologists we ever ran into that were accurate - the truth that
doctors rarely tell about other doctors.
He divided up treatments into "high tech" and "low tech",
and pointed out that all the "western" procedures that were under
investigation in America were under investigation in Beijing, thus
making them "chinese". In this way he attempted to be a bridge between
the crackpots and the doctor community in a way that was fascinating.
We only met him once, and didn't work very closely with him. I would
recommend him, though, but consider him a "medical consultant", not a
herbalist.
Bernie Segal's book, and tapes, on being an exceptional patient. Although I don't agree with all of it, I think he says good things about being exceptional.
http://brain.mgh.harvard.edu/PatientGuide.htm
http://clinicaltrials.gov/
http://home.earthlink.net/~sdepesa/
That book by Michael Lerner
http://www.bjcancer.com/
Ann's journey has ended. Ann died on February 24th, 2003. In early
January the disease started progressing, but was growing on the spine,
below the area of the brain scans. This is a very rare path in disease
progression. Although we were seen by our oncologist on January 5th
complaining of numbness in one foot, we didn't get the spinal
metastasis
discovered until about 3 weeks later. At that point we
embarked on a high powered and aggressive radiation path, which we
hoped
would do well since radiation had done very well before. However, this
time the cancer did not budge, and quickly took over. The progression
through her spine was quick, and she rapidly lost the ability to walk,
then control her bowels. We had some excellent home care, which made
much of the difference.
I was not very happy with the care we got from our oncology team at
this point. Ann said she wanted to fight this completely, but Dr Prados
would not prescribe further chemo. We should have been on a different
chemo starting the day the cancer was discovered, but instead he
removed all chemo drugs. He raised issues with blood clots to get Ann
to not demand further chemo, whcn blood clots were the least of her
problems. Although I agreed with Dr Prados' (and every other doctor I
talked to) theory that far into disease progression, no treatment was
the best option, but that's not what Ann wanted.
Dr Prados and I had a long talk regarding this entire phase, so I
believe I know where he was coming from. He believed that when the end
was in sight, the patient should be made aware of that, and be allowed
time to make their peace with the living - for the sake of the living.
He was hoping that she would have a few weeks to spend with us without
and horrible symptoms, and to allow us those weeks to bask in each
other's love. He said that patients who don't do that last bit of
communication leave a horrible burden to their survivors. Although I
can completely see where he came from, I also feel bad that I don't
think we (he and I) did what Ann wanted.
The last stages of this disease are horrible. I've been unable to
finish writing this document because it brings up memories of the last
month. The time I'm drafting this section is just past 6 months after
Ann's death. I'm sitting in a cafe in Berkeley, CA. It's an
astonishingly beautiful day, with sun streaming in the windows, and I
have an entire life ahead of me - yet I can just barely write this
without the aching pain in my chest taking over.
First, Ann lost the use of her body, which took a few weeks. The
pain was sometimes terrible, and it took me a bit of work to master the
use of the morphine needed to keep the pain under control. Ann was
fairly adamant about staying at home - she felt that if she went to a
hospital, it would be to die. We had home care from a visiting nurses'
association, Sutter VNA, which was excellent. They taught me how to
dress wounds, how to change her diapers with the least stress, how to
feed her and keep her hydrated. Dr Prados removed the chemo drugs, and
clearly the cancer started progressing in Ann's brain as well as along
her spine. She lost some powers of cognition, and wasn't able to read.
She did recognize us, and me, until the end of her consciousness. She
had some kind of unusual time disassociation in her last few weeks of
consciousness, so that she would jump back in time a few minutes. She
started singing, something she couldn't do while healthy - sang songs I
barely remembered, sang songs I've never heard.
After she had lost the ability to walk, but before she lost much of
her mental abilities, she gave a poetry reading in Oakland at 21 Grand.
She read all of her favorite poems. I could tell she was having
problems. She never stumbled over a single word during a reading, and
this time she lost her place several times. The overwhelming emotion,
though, was one of an exquisite moment, a moment of bright red and
yellow heat before a body is utterly destroyed, and is no more. It was
like a funeral with the body still living, as we had to bring a bed and
have Ann read from it. At the end, since she couldn't sit up, people
gathered around and talked to her, one by one. In many cases, it would
be the last time they saw her alive.
In those last few days I had contact with Dr Renneker, who I think
is an amazing guy. He and I hit it off well, but the reality was that
we were too far down the curve to really help Ann, although we tried.
He and I both knew that he was really supporting me, and supporting me
in the promise I made to Ann. This was during a time that I had only
barely allowed my own desires to surface, so allowing there to be a
shift to what was right for me was very helpful. Dr Renneker is really
a double edged sword. He does practice optimistic medicine, and the
"doublethink" required to be optimistic about someone who is clearly in
their last few days of life is tough.
Ann never admitted that she was going to die, and fought with every
breath. I tried to fight along side her, and make all the decisions as
she would have wished them to be made. She was never admitted to a
hospital, and died at home with me, her brother Dave, her step-mother
Susan, and our friends. One of the last things she did was say my name,
and smile. I understand that some people who die of GBM lose their
memories, and lose control of their emotions. Although Ann was taken
apart, piece by piece, she never lost whatever was her until she took
her last breath.
I threw a terrible, manic energy into planning a funeral for Ann,
and a celebration of her life. Throwing a party of that magnitude on a
few days notice is not simple, but both were excellent - the funeral
especially. Ann died on Monday, we had a service on Friday at Chapel of
the Chimes in Oakland (which I highly recommend), a celebration of her
life on Saturday, and most people flew home on Sunday.
The months since her death have been hard. In the following weeks I
was blessed and cursed by a hyper-accurate view of the world. My
therapist called it "high contrast living", where everything seems so
clear and either true or false. I was mostly alone for a few weeks, and
going crazy. I met a friend of my band, Gitty Duncan, and moved in with
her. The reality of being in the house where Ann died was just too much.
For myself, I had to move on quickly. The pain of being submerged in
things Ann was just too much. One of my closest friends was worried
that I wasn't grieving enough, but others said that perhaps I had
already grieved enough. I've let my hair grow back, based on the symbol
that I wanted to remember and attach to Ann as she was alive, not view
her only through her illness. Now, just past 6 months after her death,
can I finally look back to her and feel simply sad and happy. Happy to
have known her, and sad that she's gone.
An idea that I'd add for caregivers and friends of caregivers is
that the death of a primary partner in the middle of life has one
special difficulty. Quickly, it seems, friends melt away. They don't
know what to say, they don't want to be reminded of the deceased. But
the surviving partner is now terribly alone. Not only does he not have
his usual set of friends, he's also missing his best friend, his
partner who he thought would always be there to share the hard times
and the joys. I felt all these terrible surges in emotion, anger and
happiness, zooming to dizzying heights and terrifying lows, but
without my best friend to share them with. If I could say one thing to
caregivers of caregivers - just stay in contact. If you care, extending
a hand, keep reaching toward them, even if they complain. They're now
deeply in touch with what being alone is about, and what being cared
for is about. If you approach them with an open, caring heart, nothing
you can say will be wrong.