I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

Part 34 - Failure to Launch

Continued from Part 33 

At admission, Mom had provided the hospital staff with a copy of the medication log that we had been using for Dad at home with names, dosages, and dosage times for each of the dozen or so drugs that Dad had been prescribed.  Several of these had been switched over to IV-form and added into the IV line; a few were brought in for Dad to take in pill-form as he had been at home, which was a problem because he could barely swallow.  Even after a phone call to the oncologist’s nurse and discussion with the nursing staff at the hospital, I was still concerned about the expectation that he could effectively and safely swallow pills and because some of the dosages being administered didn’t match what he’d been taking.

When the oncologist came to see Dad on the oncology floor mid-morning after Dad had been admitted, he rewrote the medication administration orders.  He looked at Dad and said that, although he felt it was unlikely that the cancer had advanced at this point given the treatment protocol Dad was on, we couldn’t be sure about anything until we could get an MRI, which he felt wouldn’t be possible for at least another day or two due to Dad’s decreased level of alertness and his pain level. 

His main plan seemed to be waiting to figure out what the plan was, which, as the family of any cancer patient knows, is NOT a good plan at all.  Delays are Enemy #1 when dealing with an aggressive cancer like Glioblastoma, but, until we knew more about what had caused Dad to decline so rapidly in such a short period of time, waiting was really all we could do.

The oncologist told us that in addition to a blood transfusion and platelets that he was considering ordering to boost Dad’s blood count, he also wanted Dad to get a medication called Neupogen, which is a growth factor that stimulates the production and activation of neutrophils, a type of white blood cell.  At the mention of the drug, an alarm went off in my head, and, upon quickly reviewing notes in the Notebook, I saw that Neupogen was listed on the treatment protocol that Dad was on from Duke under Things To Avoid.  On the paperwork we’d been given at the Brain Tumor Clinic, I had scribbled a note out to the side that read, “As a growth factor, admin of this rx – potentially counteractive to Avastin.”  I showed the info to the oncologist who looked perplexed; evidently, he did not already have this information, even though he had used Avastin to treat other patients before Dad.

The next move was for the oncologist to consult with the neuro-oncologists at Duke who had authored the protocol; our guy said he would get right on that and get back to us on the Neupogen.  “We need to get his blood counts back up,” he said as he left the room, “and then he will get exponentially better.”

Dad had had an appointment to get a monitoring-type of MRI that very afternoon and had been scheduled to get Avastin and chemo the next day, and I was filled with disappointment that our plans had had to change.  Thinking that we could get some GOOD news for a change, I’d been so focused on getting that follow-up MRI, despite the fact that I, like Dad and like the rest of my family, had developed a raging case of Scanxiety.  Now that he was too sick to even get an MRI (and considering the fact that when he did get one it would be to check for problems instead of monitoring for progress), I saw that I should have been grateful for him have the chance to get the scan instead of the alternative, but, as usual, that was all only seen in hindsight.  Now, instead of at least having a Plan, we were left with only a cancelled plan and confusion.

And fear.  Dad was so weak at this point that he couldn’t lift his head from the pillow, couldn’t suck liquids from a straw, and could barely talk loudly enough for us to hear.  He had a deep cough, and the coughing exhausted him and made his  throat and chest hurt.  When asked, he reported that he had a headache “in the middle” or “in the top” of his head ("seven or seven and a half out of ten" on the pain scale, he said), which of course made us think that the cancer had spread despite the oncologist’s prediction. 

For the rest of that day, Dad was in and out of a medicated fog, on a heart monitor, with multiple IV lines going, and getting oxygen through a tube in his nose.  In getting him settled in the hospital bed after he was admitted, the nurse had discovered a pressure sore the size of a pencil eraser on his low back.  A wound care team consult was ordered, and this area was cleaned, treated, and dressed; Dad later told us that that sore hurt almost as much as his head had been hurting, another dire consequence of an impaired immune system.  By late afternoon, the Infectious Disease team had ruled out viral meningitis, and over the next 48 hours cultures were going to be grown in the lab to test for bacterial or fungal meningitis, pneumonia, and other types of infection.

As hard as it had been to get through the stressful, sleepless nights since Dad’s diagnosis, that was nothing in comparison to the first night of the second time Dad hospitalized: it was the first night that I thought that it was entirely possible that Dad wouldn’t survive, not just the cancer but the night.  We were lucky enough to have our case assigned that night to a nurse named Meredith, who provided exceptional quality of care for Dad and who took Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember.

Even in the haze of the pain and the pain medications, Dad strived to be appreciative and polite. With his throat incredibly sore, he offered a husky “Hello!” to the woman who came in to empty the trash can in the room, and he gave a gravely “Thank you!” whenever one of us used a finger to hold liquid in a straw and then release it in his mouth or when we put chapstick on his cracked lips.  He, of course, took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Not long into her shift, Meredith said she had orders to administer Neupogen; I relayed my concerns and the earlier discussion with the oncologist to her, and she put a call in to the doctor to verify the orders.  Contrary to his earlier commitment to “get back” to us on the issue, the oncologist hadn’t communicated with us at all on the Neupogen verdict, but over the phone he told Meredith that he had consulted with the doctors at Duke and they had agreed that the priority was to boost Dad’s blood counts and thus the drug should be given.  This was the first of many points of confusion and miscommunication (or non-communication) in Dad’s care, but, like the rest of the family, I was grateful that the medicine was being given despite the way we’d found out about it because I was desperate to find something that could help Dad get through what I saw as a bump in the road, even if it took altering the protocol or the plan to do that.

Over the course of the next several days, I worried a lot about how and when Dad could get the next dose of chemo/Avastin; I made fervent notes in the notebook about it in between the times the oncologist came by to check on Dad.  When I asked about when Dad could get it again, the oncologist said we needed to get Dad stabilized, and then he added, “Avastin has a three-week shelf life, and it’s only been two weeks since he’s had it, so we aren’t losing ground if we can get it in him within the next week.” 

I wanted that Avastin for Dad like I was an addict on a street corner.  I was like a boxer warming up before going into the ring, punching the air and wearing a super-tough look on his face.  Maybe even growling a little:  Here we come, Cancer, and we’re going to kick your ass!  But I was wrong.  The cancer, the treatment, the illness didn’t even give us a chance to step into the ring.  We were so tired of Cancer and of tears and terror; we needed some Good News, but, other than the fact that Dad was still in the game at this point, there were none to be had.  Cancer could wreak havoc on Dad’s body, but it couldn’t touch our love. 

Up next … Part 35 – Hanging On

Part 31 - Battling

Continued from Part 30

During the 75 days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed.  The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side.  His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all.  When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs.  When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.

On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees).   In typical form, though, Dad mustered his strength and pushed on, as did we.

On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California.  Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there.  Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervise him at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom.  As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater.  When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.

Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car.  In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go.  Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car.  Dad was insistent, though, and so the mission was scrubbed.

Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again.  Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally.  We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.  

When my sister called to tell me about the afternoon, I put a call into the oncologist.  I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s.  I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment.  I told him that we are all discouraged at the lack of progress.  He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage.  He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.

In the meantime, my sister had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday.  With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.

                       Dad loved "The Sound of Music," and this song makes me think about how

                          we felt like we were climbing mountains, fording streams, and following

                                    rainbows with all the love that we had, in search of a dream.

Coming soon ... Part 32 - Falling

Part 14 - Missing the Boat

Continued from Part 13

In spite of the involvement of the many doctors and other health care professionals who were on the case at varying points along the way during the time Dad was sick, one thing that was consistently lacking in his treatment was any kind of quality professional emotional support.  Looking back at everything that was going on and considering the many concerns we had about Dad during those ten weeks, it’s really a no-brainer (pun intended) that some kind of psychological intervention should have been provided for him from Day One. 

As I’ve said, Dad had an uphill climb in many areas from the start of his illness.  First up: the neurological problems - the tumor that was so large it was causing an actual shift of the normal structures in his brain, the swelling around the tumor site in his brain, the damage that resulted from the minutes he went without oxygen to his brain after he stopped breathing during the MRI just after he got to the hospital, and the probable harm suffered from the two grand-mal seizures he suffered before he was put on heavy-duty seizure medications.  Next on the list were the pharmacological issues – that anti-seizure medication, the chemo (Ever hear of chemo-brain?), the massive doses of steroids, the out-of-control blood sugar issues that resulted from the massive doses of steroids, and, of course, the pain medicines.  Last but in no way least was the emotional stress that anyone with a devastating diagnosis would have, amped up exponentially because of the confusion and roller-coaster mood swings that come from the aforementioned (particularly, injuries to the frontal lobe of the brain and the steroids, both of which typically wreck havoc on one’s emotions).  Add to that the utter lack of sleep and the total loss of control that Dad had to contend with and it’s surprising that he was able to do any of the things that he did during the time that he was sick.  He was, simply put, tough and amazing beyond words and beyond belief. 

But, with all those strikes against him, all of which were absolutely evident to any trained medical professional who had access to his medical records, how in the HELL did each and every one of them miss the boat entirely with regards to such an important part of Dad’s treatment???  Knowing what the doctors knew, being fully aware of the seriousness - actually, of the incurability - of his disease, wouldn’t it seem like Brain Cancer Care 101 to bring in someone to address emotional issues? 

But it never happened; the doctor was definitely NOT in to provide that vital care – and that is something that unquestionably caused Dad to suffer.  For as long as I live, I will be angry about that and feel guilty that I personally didn’t recognize what should have been provided and make it happen.  Actually, I feel like there should have been a counselor or psychologist or social worker or SOMEONE with that kind of knowledge and experience to tell us what to do in many instances involving psychological concerns, to let us know what to expect in that area, and to help us be prepared to handle things better so that we could better care for Dad emotionally.  We needed to know how to talk to Dad about things like his diagnosis and his future.  We were just making things up as we went along, going on gut feelings but really without a clue as to what we were doing as far as giving him the emotional support that he so needed and so deserved.


Addressing tough emotional issues with someone with a terminal illness has got to be one of the hardest things a person can ever have to do, one that we don’t have any knowledge of how to handle and one that matters so much.  There are no take-backs, no do-overs, and no second chances when the hard, scary questions come up, and it was so utterly unfair that we were left to fly by the seat of our pants on this.  We could love him with all of our might, and we certainly did that, but we needed help with the rest of it.

The only time Dad’s mental health was touched on at all during the whole ten weeks that he was sick was by a neuro-psychologist who worked at the rehab facility.  My guess is that this guy is routinely called on to consult on all cases there, not just the brain tumor/terminal illness/neuro-related ones.  When he stopped by to meet Dad on the first day we were there, Dad liked him immediately, although - two truths be told - Dad pretty much liked everybody, and I think he was especially partial to this guy because the guy looked like a runner, although I have no idea (and neither, of course, did Dad) if he was an athlete of any sort or a Couch Potato who just happened to be tall and thin.

Dr. Neuropsychologist was nice, and I think he was good enough at his job; he just didn’t do enough in our case.  On the five or so occasions while Dad was in rehab that he spoke to Dad, he threw out some colloquialisms like “Rehab is definitely the place to get better!” and “You just have to find a New Normal!”  (***Side Note:  I cannot be held responsible for my actions if anyone EVER says “New Normal” to me again.  I DETEST that term!***)  At one point, he suggested Dad start writing about his feelings in a journal.  Um, hello?  He can’t write legibly because he has almost no sensation in his dominant hand, plus, except for having kept years of logs of running times, he is one of the least journal-y types of people who ever walked the earth.  Dr. N was just one in a long string of medical people who didn’t really know my dad, and, really, who didn’t care enough to do one single thing outside the scope of the job description.  I called it "watching the Cancer Channel;" these people evidently are ok with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real.  They leave the impact at the office. 

Just after our first visit to the radiation oncologist’s office, Dad started asking some of those tough questions, many of which surfaced and re-surfaced in the middle of the night.  Mom was left to field the majority of them on her own because she was with him the most.  She answered the ones she could and wrote down the others in the Notebook; Dad told her to what to write so they could ask a doctor about those things later.  When Dad asked for information from the Rehab Director, the guy answered some questions but left Dad hanging on others.  Many of them he answered incompletely ("You will get chemo but I'm not sure for how long."), and for some he used hard-to-understand medical terminology (“Let’s talk about neuroplasticity!”), both of which I felt were worse than not answering at all.  Mom made a new list of the leftover questions – things like “Can I get well?” - for Dad to ask the oncologist at the next appointment, which unfortunately was not scheduled to occur until Dad finished rehab and had gone to Duke. 

The second time Dr. N came to visit with Dad in the rehab hospital, he went into detail about what he assumed the treatment would be for Dad’s type of cancer, which was odd because at that point no one knew what the protocol would be, since we had yet to have the consult at Duke.  Regardless, though, I guess the guy was trying, and Dad appreciated having things explained to him by someone he for some reason liked.  Dr. N asked Dad if he was sad or depressed, and Dad - ever the “I’m Fine!” guy in front of the doctors - told him no.  (***Side Note:  Doesn’t that seem to like a Red Flag?  Who WOULDN’T be sad or depressed given what Dad had been told?***)

When Mom told me over the phone about the list of questions that Dad had dictated to her to go in the Notebook, a Red Flag went up for me; I felt like Dad was starting to get a true picture of the direness of the situation, and in a way it seemed like a good sign that he was moving past saying things like “I don’t have real cancer.”  But Mom also told me that Dad had gotten really angry that afternoon because he had lots of trouble when he was trying to type an email for his job.  So, “I’m fine” attitude be what it may, Dad was obviously suffering, and rightfully so.  I called the Rehab Director that night and told him we thought Dad needed medication and more intervention for anxiety and/or depression; his answer was that Dr. N had spoken directly to Dad just that afternoon and had been told that Dad wasn’t depressed.  Hmmmmm.  I am ashamed to say that I let the matter drop for awhile after that; we were juggling so many balls in the air, but that’s no excuse.  I put it on my ever-growing list of things to ask the Duke doctors about a week later and went back to plugging away at worrying about and trying to address the many other critical issues going on. 

Maybe it’s too much to have expected medical support on this, maybe the ball wasn’t dropped by them because that’s just not how the system works, and maybe I am just looking for someone besides myself to blame.  Maybe it wasn’t only the health care workers who missed the boat.

Continued here … Part 15 – The Bubble

Telling The Story

The process of coping with Dad's illness and his death and then struggling with the grief has been such a learning experience for me, in some good and some not-so-good ways.  It changes one forever, that’s for sure.

I've been going to a grief counselor and a grief support group for the last several months and have found it to be helpful.  Each person in the grief support group has a different story to tell.  The group is full of different personalities, ages, backgrounds, situations, and beliefs, but many of our feelings and the ways we are muddling through grief are similar.  It is comforting to me to know that this is all part of Normal (whatever that is). And, when we talk about the loved one we lost, when we tell their stories and ours, I love how our voices weave together in common threads despite our differences.

I don’t think things get better in time after the loss of a loved one ~ it hasn't for me at least so far ~ but maybe we get "better" at coping, and, even if we don't, life goes on, which in and of itself sometimes makes me cry.

One of the most helpful suggestions I’ve gotten from the counseling sessions has been to write.  The counselor doesn’t say what to write, or when, or how much, or why – all of that is left open to be figured out and/or determined as needed by the bereaved.  Some of the other people in the support group have said that writing doesn’t help them, some say they can’t get started or just don’t want to do it, and one person even said it made her grief worse. 

It is helping me, though.  I’m not sure why, but I am glad and grateful that it is.  Maybe it’s because I think that having a written record of my memories, thoughts, and pain will make it more likely that I won't forget anything, which is a big fear of mine.  I believe that as long as there’s someone around to remember a person or an event, it still exists.  It breaks my heart that I can’t see or talk to my dad, but at least through writing about him and what I’ve learned as a result of having had him in my life, I can still hang on.  He took a piece of me with him when he went on ahead, but, through writing, I know that a piece of him will remain here with me.

From the grief counselor, I’ve learned that there are certain questions and concerns that almost everyone who is grieving has at some point.  One of these things the bereaved frequently wonder is if there was anything else that could have been done to save the person who died.  Of course we wonder that; it’s human nature.  I know, though, in my heart that we did all we knew to do to take care of Dad and to save him, and writing helps me to confirm that. 

And then there’s the Denial, still lurking and always trying to gain a foothold.  For a few seconds at a time, my mind sometimes allows me to believe that none of the events of the past year actually happened.  But then I remember, and I am thrust back into the icy Sea of Grief. On the surface, it seems like I would readily invite the Denial that gives me the high of the fantasy in which my dad is alive and well, but, in reality, it brings about a hangover that leaves me hurting and struggling to breathe. Writing is helping me to accept that it really happened, to cope, to let some of the things that don’t really matter go. 

I think about the significance of the stories that I’ve told about Dad so far.  It makes me feel better to have it on record how much of an impact he had on me and on other people, even though he certainly wasn’t aware of his influence or aware of how his kindness touched so many people.  I believe that writing can be a powerful healing balm and that it can console those who are grieving with thoughts of better days both in the past and somehow also in the future. Scribed words are proof that my dad’s life mattered.  And, most importantly to me right now, it is a connection for me to my dad, one that I know will always be available whenever I need it.  Yet another way that my dad has shaped me and at the same time has given me the tools that I need to do what I need to do.  Thanks again, Dad.

“I believe that imagination is stronger than knowledge, that myth is more potent than history.  I believe that dreams are more powerful than facts, that hope always triumphs over experience, that laughter is the only cure for grief.  And I believe that love is stronger than death.”  ~Robert Fulghum

Guest Blog Post - Emotional Support

I’m pleased to share the following guest blog post by David Haas, who contacted me recently to ask about contributing to this blog.  I fully agree with David’s remarks about the need for emotional support for those who have or who have had cancer, and I will add that I personally have also experienced great benefit from grief support groups and grief counseling services since my dad went on ahead.

Besides support groups and individual counseling sessions, emotional support for individuals with cancer and their families can come from social networking – in cancer-specific formats like The Cancer Buddies Network (www.cancerbuddiesnetwork.org) and general formats like Facebook – as well as from friends and family members.  Obviously, it can be helpful to get the appropriate emotional support during treatment (Sadly, my dad’s team certainly fell short in this area, and he suffered because of it.), and it can be equally important to get it after the treatment is over or, as in my case, when dealing with grief after a death of a loved one.  Certainly any type of cancer can bring about the need for support, and, like David and many others, I encourage anyone who is dealing with Cancer to seek out those services as needed. 

And now I will hand off the Talking Stick to our guest, David Haas:

The Benefits Of Emotional Support Networks For Cancer Survivors

The need for emotional support does not end when the cancer treatment ends. Cancer survivors need as much support after cancer as they did during treatment. Emotional support systems can help people manage their challenges during any stage of cancer. And they are vital for improving quality of life.

What Is Emotional Support And Where Does It Come From?

Emotional support systems are more than just a concept. They are the people, organizations, and programs that help individuals through cancer. Cancer survivors need many types of support: emotional, social, spiritual, medical, financial, and legal. Emotional support systems are especially beneficial because they provide encouragement, comfort, and assistance during a difficult time.

Many people and groups make up an emotional support system. Family members, friends, health professionals like the doctor or the oncologist, neighbors, colleagues, faith leaders, and other cancer survivors -- all of these people can answer a cancer survivor’s need for support. But survivor networks may be the most valuable support of all. Here are some online support systems that have proved to be very beneficial:

Inspire.com

Caring Bridge

Cancer Survivor Networks

Cancer survivor networks consist of people who have “been there” and “done that.” They understand cancer better than a doctor or loved one, because they have fought the battle and survived.

Talking or writing about cancer -- and all the feelings, frustrations, and fears it stirs up -- is an important part of the healing process, even after treatment. Cancer survivors often heal best with the help of emotional support systems like survivor groups.

Cancer survivors can find support in-person and online. Local support groups often meet in hospitals, churches, and homes. Group members share stories, resources, advice, and encouragement with other cancer survivors.

Online communities allow cancer survivors to interact over the Internet, and anonymity is optional. In fact, online groups are the best option for some people, who find support in blog posts, discussion forums, chat rooms, instant messages, and email communication.

The Benefits Of Support Networks

A study by the California Breast Cancer Research Program examined the effectiveness of online support groups for breast cancer survivors, with encouraging results. Women who participated in electronic support groups were better able to cope with anxiety, depression, and pain. They were also more optimistic and expressed a zeal for life.

While the study looked specifically at breast cancer survivors, support groups are likely to have similar effects whether a person has prostate cancer, mesothelioma, or other malignancy. And support is helpful whether it comes in the form of a local group or online community.

Each person’s cancer journey is unique, and each survivorship is different. The emotional support of doctors, family members, friends, and co-workers is essential. But encouragement from the people, who have battled cancer and won, is often the best emotional support of all.