Dear Mr. Trump

Mr, Trump

Congratulations.  You have won the US election, beating the most qualified person ever to run.  

I am reminded of your 1998 quote in People Magazine, “If I were to run, I’d run as a Republican.  They’re the dumbest group of voters in the country.  They believe anything on Fox News.  I could lie and they’d still eat it up.  I bet my numbers would be terrific.”

I now have to tell my children that the person that just won the highest office in our country, YOU, should not be modeled.  It is not ok to be racist, misogynist.  It is not ok to lie to manipulate other’s beliefs and behavior for a gain.  It is not ok to threaten those who disagree with you or even say things about you that hurt you.

One of my son’s asked me if we were going to be ok when he woke to find you as president.  Another of my son’s said he wasn’t afraid for himself, but his friends who are immigrants or Muslim, or black.  These comments make me anxious and make me grieve.

Your behavior has been disgusting.  Your efforts to divide this country are reminiscent of Hitler.  Your ego comes before all else, and puts our country at risk of losing allies, gaining enemies, for inadvertently starting a war.  Your ability to lie for no apparent reason is quite fascinating from a psychological perspective and simply an indicator of narcissism.  But from the perspective that you are the leader of our country, you are a threat to the very core of what America is, or should I say, was thought to be.

You do not represent my America, which is inclusive, and thoughtful about it’s place on this globe.  You represent a place where we all should be afraid to live.

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Physical Therapy for Cancer Patients

As a patient I have read scores and scores of material about how exercise helps increase patients’ ability to fight cancer and helps prevent recurrence.  That’s great.  Right?  I mean it puts something in the control of the patient.  Right?

Well, let’s just say, there’s more to think about.  The road to recovery in itself can be debilitating.  Many have surgeries with resulting scar tissue, and then begin chemo as soon as possible, if not before the surgery, and some have radiation before, after, or during the chemo.  And then there’s recovery from the recovery which has quite often left the patient as small lump of  who they were before.

That’s the way it was for me anyway.  Prior to my cancer battle,  I was an athlete, exercising quite a bit and very healthy except for the cancer of course (and there was too much stress in my life admittedly).  So when I see these articles, it’s just infuriating.  Let me explain ….

Chemo, along with the psychological trauma depleted me, with my first bout of cancer.  I was sick and unmotivated. And then Avastin made me feel like I had rheumatoid arthritis and I ached and ached.  As I was just starting to feel better I had to do a second battle for a different cancer.  This time my stamina was demolished and my muscles were so atrophied.  I was like “scush” (yes that’s my own word) on the couch.  Along with the significant scarring from surgery, my body image plummeted and I honestly could not figure out how to even start again.

I give sincere thanks for proof that exercise is a significant factor in fighting cancer.  But right now, in my experience, it’s only amounting to academic papers and statistics for most oncologists.   Honestly, couldn’t the field of oncology do better about paying attention to what is really going on with their patients?  Not one time did a medical or surgical  or radiation oncologist suggest physical therapy.  Not once!  And it would have helped me and I am sure it would help many.

I finally did go to an integrative oncologist.  After, complaining profusely about my loss of physical ability (and honestly, for me, some of my identity with that), and the painful scar tissue, she recommended physical therapy for reconditioning.  What a thought!  Thank you!  Thank you Dr. Laurie Herscher!   It started me on my way.  I was able to complete the PT and then transition to the gym where I continue to regain strength and stamina.  My sense of well being is starting to move as well.

But I can tell you that I don’t understand why this isn’t standard course of action, for an oncologist to offer their patients. Many could benefit tremendously with some sort of therapy during and after chemotherapy and radiation, and to help recover from surgeries.   I have read volumes on how oncologists consider quality of life, but besides not ever asking me what I thought mine was, not one ever suggested physical therapy as an adjunct to chemo or radiation, or as a transitional step after treatment and reaching remission to actually live my life again.

I remember when my last chemo was finished and my blood count was actually normal, I tried to run.  I couldn’t run, and was seriously afraid of falling!  Before chemo, I could have run a mile at a drop of hat.  I was stunned and it was a devastating feeling.  Was I never going to be able to run again?  I wasn’t old enough for that.

I realize that maybe before treatment many people may not able to run, but I am sure patients commonly feel this way about some physical aspect of their lives during and after treatment.  They are weaker, less coordinated, feel unsteady, have less control over balance, and less stamina.  Equally,  there are many people in chemo or radiation, that may not be able to exercise during treatment, and some patients are not in good physical shape to begin with, but it matters.

Supporting physical therapy should be offered and encouraged if the patient is able.  Exercise does  boost the immune system, and helps the patient psychologically with feeling like they have some control, like they have a way to combat this thing, or that they are making their way back to whatever their normalcy was.

There is also a lot of written material produced by experts about how important life changes are, like transitioning to a healthier diet, incorporating meditation into a daily routine, and exercising.  These are all proven to  help with recovery from cancer and in preventing recurrence.  But again, for many surgical, radiation, and medical oncologists, once a patient has reached remission, they forget the rest, or they are simply focused on their expertise along the way, and not on helping the patient help themselves.

Maybe oncologists don’t understand themselves what the chemo is doing.  Oh they get it by watching the cancer markers, and the white and red blood cell counts and the hemoglobin, and liver enzymes, but I mean on a personal level.  Do they really understand what it translates to in a patient’s life?   Getting to remission is more than just awesome, but there’s a lot more to recover from.  Cancer can leave a massive wake …..

Chemotherapy and radiation themselves are awful (though currently necessary) methods used in medicine.  They are poisons.  So from the aspect of the oath, “Do no harm,” oncologists should take a step further and incorporate recovery  from cancer recovery into their standard course of care.  Remission is a terrific and hopefully reached goal, but the possibility of reaching remission could be enhanced and regaining a quality of life that is meaningful  should be considered.  Help the patient exercise!

Exercise does boost the immune system and it’s ability to naturally fight cancer, so oncologists this is your call. Help your patients during their fight and help them recover more fully.  And patients, if your oncologist doesn’t offer it, push for it!  It makes a difference.

 

 

 

Ask me about my quality of life

Every time I walk into my oncologist office, there is a series of things that happens before I see the doctor.  They take my weight, blood pressure, ask me if my medications have changed, and a little different than the General Practitioner’s office, they ask me if I am in pain, and if so will ask me to rate it.  What I never ever get asked is how, according to me, is my quality of life.  

Why don’t I get asked that?

Oncologists spend a lot of time talking about quality of life at least in their online papers and discussions and many web sites mention qualify of life, but what’s going on here?  Is this something that the oncologist evaluates for the patient? Shouldn’t the patient get to participate in that evaluation?  Doesn’t the patient have a perspective that the doctor can’t possibly know?

The term, “quality of life” is actually listed as a single entity in dictionaries.  Here’s the definition according to the Collins online dictionary.

noun

the general well-being of a person or society, defined in terms of health and happiness, rather than wealth

I would say at any point in time, my general sense of well-being as a person has an impact on my health.  It’s been scientifically proven that things like having a support system in place and reduced stress has significant impact  on how well a patient responds to treatment.  In fact, stress is a contributor to why some people get cancer in the first place, or recur.  So I think there’s a general acknowledgement in the oncological field that quality of life matters very much from a perspective of the higher the quality, the better for the patient.

What I don’t get is why the patient isn’t asked about how they feel their quality of life is fairing.  Maybe there’s an assumption that, because you are responding to treatment or because you are in remission, that your quality of life is good.  Or the reverse for the matter.  But it’s simply not addressed as a matter of course, as a matter of import.  There are chance discussions, but when you are ill, it’s very difficult to self-advocate.  It would be better if the patient were guided and the question and response were a matter of standard care.

I am in remission, but my quality of life is honestly in question on many days.  I am so far from the person I was physically.  The things I used to enjoy immensely like spinning and biking and power yoga are simply not attainable, and I struggle with extreme anxiety (PTSD).   I am sure this applies to many to varying degrees.   And what about work?  Many people have to quit work to go through treatment, or have to take disability time.   They may not be able to return to work because of their physical condition afterward.  There’s a huge sense of loss, of income loss, of self-value.  And then some of us have issues with intimacy, sexual relations, or body image issues related to physical depletion in one form or another, from atrophy to stamina to surgery and scars.

It would really have made a difference to me and would still make a difference to me if the oncologist asked the question, “ How’s your quality of life?”  And then took the time to listen to the answer.  That in itself at least would acknowledge the struggle.  And then the response could address those things impacting my quality to make it better.  

For example, I was an athlete before my cancer bout, and even though I had reached remission, I was still horribly physically depleted, and really struggling with atrophy and stamina and scar tissue.  I finally was lucky enough to find an integrative oncologist, Dr.  Laurie Hersher at Aquilino Center (different than my medical oncologist), who listened and suggested physical therapy to help me along my recovery.  It’s made a huge difference and propelled me in the right direction and now from that perspective, I can say that my quality of life is improving.

Now, realistically for some, and even for me, I may never be able to reset things, to go back to my abilities before cancer, but if someone at least asked me about it, I could get the help to cope with that, accept that, and redirect myself to find quality and value in other things.  

But there aren’t many doctors that ask, not even at Johns Hopkins Sibley Center, the big machine that honestly saves many lives and is on the forefront of treatment, does not incorporate this into their standard of care.  Such a simple thing.

And please, if you read this and as a physician decide to incorporate this simple question into the standard of care, please don’t ask for a rating of 1-10.  Use a picture scale with emoticons or real facial expressions.  A picture equating to the level is a much more accurate way for the patient to convey what they are really feeling.

It’s a simple question, and could help many in vastly different ways.  It can help patients help themselves as well.  This concept should honestly extend to general medicine as well.  How you feel about your life, and it’s quality matters in any healing process.

Cancer survival and PTSD

Dear Oncologists, Therapists, Psychiatrists, anybody that treats cancer patients:

Are you listening?

Caregivers too.

So here I am.  I have survived cancer, and am recovering from  the recovery.  Things should be great.  Right?  I should have feelings of gratefulness.  It’s all over and I am still here and making progress back toward me again or am I?

Well that’s not how it works for all of us.  I have survived twice.  I am still crawling out of the physical and emotional hole that chemotherapy put me in and it’s one hell of a hole.

OK, realistically, of course I realize, I will never be the same, I am missing many organs, have sat on the couch for about three years straight after being an athlete all my life, have not been able to socialize, have immense emotions of confusion, anger, depression, am grieving those things I lost, missed, have to earn back.

And realistically, of course I am grateful on a certain level.

But I don’t feel great emotionally.  In fact I am a mess emotionally.  After a visit to my wonderful General Practitioner, Gary Kaplan, D.O. (founder and medical director of the Kaplan Center for Integrative Medicine and author ofTotal Recovery. A pioneer and leader in the field of integrative medicine), I realized that what I am dealing with is Post Traumatic Stress Disorder (PTSD). In fact, he diagnosed me with it.  The crazy thing is it never dawned on my to describe my emotional state as PTSD.  I thought to myself, come on Dr. Gary, you are being a bit dramatic with the description aren’t you?  But in fact, NOT.

So I got home and looked up the symptoms of PTSD on the Mayo Clinic site http://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/basics/symptoms/con-20022540

and here we go…..

PTSD symptoms are generally grouped into four types: intrusive memories, avoidance, negative changes in thinking and mood, or changes in emotional reactions.

Intrusive memories  Symptoms of intrusive memories may include:

  • Recurrent, unwanted distressing memories of the traumatic event
  • Reliving the traumatic event as if it were happening again (flashbacks)
  • Upsetting dreams about the traumatic event
  • Severe emotional distress or physical reactions to something that reminds you of the event

Avoidance  Symptoms of avoidance may include:

  • Trying to avoid thinking or talking about the traumatic event
  • Avoiding places, activities or people that remind you of the traumatic event

Negative changes in thinking and mood  Symptoms of negative changes in thinking and mood may include:

  • Negative feelings about yourself or other people
  • Inability to experience positive emotions
  • Feeling emotionally numb
  • Lack of interest in activities you once enjoyed
  • Hopelessness about the future
  • Memory problems, including not remembering important aspects of the traumatic event
  • Difficulty maintaining close relationships

Changes in emotional reactions  Symptoms of changes in emotional reactions (also called arousal symptoms) may include:

  • Irritability, angry outbursts or aggressive behavior
  • Always being on guard for danger
  • Overwhelming guilt or shame
  • Self-destructive behavior, such as drinking too much or driving too fast
  • Trouble concentrating
  • Trouble sleeping
  • Being easily startled or frightened

 

Intensity of symptoms.  PTSD symptoms can vary in intensity over time. You may have more PTSD symptoms when you’re stressed in general, or when you run into reminders of what you went through. For example, you may hear a car backfire and relive combat experiences. Or you may see a report on the news about a sexual assault and feel overcome by memories of your own assault.

 

I went down this checklist and guess what ….. check, check, check, ……. and check.   For the most part, these symptoms fit me and my guess is that they fit many cancer survivors.  

I may not have come back from Afghanistan or Iraq with PTSD but I definitely have it.  What triggers my PTSD is much more stealth.  I mean, it’s obvious that a backfire of a car might trigger PTSD symptoms in a soldier.  But what triggers my symptoms are quiet things, just the word “cancer” for example, smells, doctor’s visits, blood tests, driving past a specific building, or a bill in the mail from a doctor or hospital, and there’s a barrage of those.

The crazy thing is the enemy I experienced is from within. I can never leave the enemy. How can I ever ever shed the enemy which was my body?  It is essential to my survival.  It’s not like I can do without it.  

So now what?  That’s just it. I don’t know.  

What I do know is that this aspect of recovery is being severely overlooked by oncologists and psychotherapists and psychiatrists., and many medical professionals that treat cancer patients, so I guess the starting place is to ask them to pay attention, and to help their patients get help.

I do know that I am lucky.  I have a therapist, an integrative oncologist, and a general practitioner who at least recognize this in me.  But honestly, my oncologists were clueless, even at Johns Hopkins.  

One answer I do have is that any type of stress control mechanisms work.  I use a variety that work for me, the most important of which is meditation.  Thank goodness for Janet Connors, my therapist and my Dr. Gary for insisting this be a piece of my life and coping.

The lack of recognition though is devastating.  My husband, though an unbelievable support mechanism and care giver, doesn’t even recognize what’s going on with me as PTSD.  I think it would be different if I had been in a war situation combat.  Then it’s visible, understandable.  I don’t think he realizes the combat (cancer) and the enemy (my own body) and how that really messes with me.  And of course my friends and family don’t get it either.  At least, if I had been to war, they could be talking behind my back or confronting me about my PTSD symptoms, but as a cancer patient I don’t even get that recognition which honestly, would really help things.  I believe it’s kind of surreal to them, maybe even not real, maybe like me, they don’t want it to be real.
But it’s real, so if you are dealing with it, you aren’t crazy or alone.  Go get help for it. And if you are a caregiver, or a friend or relative, please understand and help from that perspective as well. As aprofessional, please pay more attention. There’s more to it than remission. 

Cancer Survival Intro

So….. this is my introduction blog.  

I am not sure I really want to do this and I am not sure that I can stick with it.  Mostly, because it’s a subject I try to even avoid thinking about these days, but I do anticipate that what I have to say may resonate with some and at least there’s that.  Maybe for others, it will open a new pathway of thought in the care of and living with cancer patients and cancer survivors by the professionals and  caregivers and family and friends.

I will talk about all kinds of things in this blog is my anticipation, some very personal, some just rantings, some practical, some experiences, some opinion, some worthwhile hopefully…..

Topics I am considering covering will range from PTSD, integrative cancer treatments, oncologists “care,” things they don’t tell you that could help, meditation, things you wish your family understood,  why do friends abandon, emotions maybe, and I am sure many more.

I guess I should mention my credentials  haha.  I was diagnosed with Ovarian Cancer, undergoing surgery Feb 29, 2012.  I underwent what they call debulking surgery, removing my omentum, appendix, fallopian tubes, ovaries, and a bowel resection.  I then underwent IV and IP chemotherapy.  I finished chemo in August 2012, and did another year of Avastin through August 2013.  Then in November 2014, I was diagnosed with another cancer in my stomach, a different cell type.  (This will certainly be a blog in itself, the argument over what the hell it was.)  I underwent 28 days of radiation, supported by weekly chemo, then went through another 8 rounds of chemo, ending at the end of May 2015. So been there, done that, and it ain’t easy, but this side of things isn’t as easy as I anticipated either.  I am struggling, and my next blog about cancer survival and PTSD will talk about it.

Please bear with me as I am new to blogging.  Hopefully, as I progress, value will become higher.

So here I go.