Mourning your good health when it disappears

[ppearl214]

Hi all,

I found this interesting and wanted to share it all with you.  It really points out that regardless of what life-altering diagnosis can be given, we all must mourn our good health when it leaves us.....

Kelley Tuthill is a well-known tv news reporter with the local ABC affiliate here in Boston. Days before Christmas, 2006, she was diagnosed, at the age of 36, with Stage III breast cancer.  She has 2 daughters, one under the age of 1.  She has lived a wonderful life and like many of us, was completely caught off-guard with her breast cancer diagnosis.

Kelley has been keeping a written and video "diary" of her progress. She has an extremely difficult road ahead of her and many in the local viewing area (as well as afar) have been cheering her on.

In reading her most recent diary update, she speaks of mourning our good health.  Yes, we try to put on a good front and keep our chin up.... and we also tell each other it's ok to have the bad days as well.... and she really touches this point in her diary entry. She also notes how Anne Romney (wife of Presidential hopeful, Mitt Romney) did the same with her M.S. diagnosis.

I share this diary entry with you now (if you want to read more of Kelley's diary entries, just click the top link to "Health"... you'll see it there) in hopes that AN newbies willl see that there is a mourning process we must go through when we are given a life-altering diagnosis. We are truly fortunate that AN's are not malignant and as for what Kelley is enduring, we can only hope that she does well for the year that lays ahead for her.  I hope you all find the inspiration in her words as I have... and reminding myself that yes, even though we have this AN diagnosis, we can surely mourn the loss of our good health... it just comes with the territory.  Please remember that life does go on with an AN diagnosis... and although we may need to be monitored for the rest of our lives, we can still thrive... as I hope Kelley does as well. Her road is going to be a tough one.....

Here is the link to Kelley's recent diary entry.  Thank you for letting me share it with you.

http://www.thebostonchannel.com/health/11114790/detail.html


Phyl

[Jim Scott]

Thanks, Phyl.

I haven't had the time to devote to a full reading/viewing of Kelley Tuthill's diary, but I'm certain it's interesting.  I'll take the time to peruse both the video and written sections in a few days.  This weekend I'm 'booked' and won't be near a computer.  I wouldn't have the time to use it, anyway.

I agree with the woman's characterization of 'mourning' the loss of good health.  It must be especially difficult when you're relatively young and are diagnosed with a possibly fatal disease, as Ms. Tuthill was.  Many of us were middle-aged or older (like me) when diagnosed with a benign brain tumor and although we might have been otherwise healthy, it was a bit of a shock to find we had a serious medical problem that had to be addressed.  However, as one who had been able to avoid the usual physical maladies middle-age often brings, finding out that I had an acoustic neuroma tumor was a surprise, to say the least.  However, as an optimist, I also was thankful that I made it to age 63 without any serious or life-altering medical problem and that what I had was benign and treatable.  It wasn't very likely that I was going to die.  When I compare my situation to that of a young woman being diagnosed with cancer, having a little child and a career in high gear, now on the back burner, I feel 'lucky'.  I retired the year before my diagnosis, my son is grown, my marriage is stable and my health remains excellent, apart from the acoustic neuroma, for which I've been successfully treated. 

Of course I wish I'd never had the thing (who of us doesn't?) and I resent some of the annoying after-effects of the surgery and radiation but, as I see it, I'm one of the 'luckier' AN patients.  Luckier than a young mother with breast cancer and even luckier than some AN patients who post on this forum.  So, yes, I do 'mourn' the loss of my former good health.  I would love to be able to magically turn the clock back a few years and never have an acoustic neuroma.  However, I can't, no more than Kelley Tuthill can in her breast cancer situation.  That unpleasant reality long since confronted, I spend little time in 'mourning' and a lot in being thankful for what I have in the way of health and looking forward to getting even better, in time.  In short, I accept my 'condition', deal with it and stay positive, refusing to allow it to define who I am.  I  would bet that Kelly Tuthill does something similar.  I hope so.

[ppearl214]

Thanks Jim for your words They truly do mean a great deal. I posted this as many newbies, who may have otherwise, overall good health, my run into this and as you so eloquently note, we do cherish the fact that, even after enduring all that we do with our AN diagnosis, treatment, etc, we do thrive  and give thanks that we are doing as well as we are.  I mourned my good health back in 1981 when I lost it.. and have learned since that life does go on... and thrilled to be a part of it, even if I am struggling with life's physical (and emotional) struggles.

You are a gem!
Phyl

(btw, middle age stinks... )

[Patti UT]

Phyl & Jim,
  I would have to agree on the staying positve and being thankful for what we have as Jim pointed out. However I think what Phyl is pointing out is that once your good health as you know it leaves you, along with many aspects of ones lifestyle (ie, physical activity etc) one really does need to take the time to mourn the losses.
  I have 2  kids to take care of and a business I was anxious to get back to. In the attempt to get back to as normal as possible of my old daily routine, I found myself getting right back to it (at a much slower pace of course)  almost without skipping a beat. I struggled with the "why" of not getting completely back to my old self for the longest  time.  ALthough I was back to taking care of the immediate needs of the day, I still was not the same. I lost so much of my ability to do the things I used to do (physical activity etc) I was feeling in a "stuck" place in my recovery. It was not until I stopped and really looked at my situation and realized I had relally lost many aspects of my lifestyle. And it was not until then that I worked through and allowed myself to mourn these "very real" losses that I felt as if I was pulled out of the "stuck" place and my recovery has been able to move forward.  At that point is when I was able to fully accept the "new me" and start to move forward as the new me instead of dwelling on wanting back the old me. And all of this took place for me with the help of this forum.  I owe you all about $100 bucks an hour for therapy LOL. I do feel that this experience really does define who we are now, to some extent
  My Heartfelt Thanks to all on this forum.
Patti UT

Patti UT

[ppearl214]

Patty, thank you for sharing that.. and yes, you clarified in better words than I did (btw, I'll take cash on that $100!)

Some of us are not that great in trying to state what we want into written words.  For those that used the link to Kelly's journal/diary will see that yes, we do need to take that time to mourn the loss of our good health, but as Kelly notes, we mourn it, we miss our good health, but life does move on and we do well with it.

I know there are many newbies on the AN site recently that have expressed fear, confusion, anxiety, etc with their recent AN diagnosis... and this link was to share that yes, we have been dealt a blow to our good health and yes, we do need to acknowledge that our good health, as we have known it to be in the past, for many of us, does not exist anymore as we know it to be, but... boy oh boy, do we forge ahead.... and my hope is that recent newbies here will see that we do endure and live life to its fullest, even post AN diagnosis and treatments.

Ok, have not had enough coffee this am, but trying to elaborate.... I think I flunked.... sorry

Phyl

[Pembo]

I was 35 when I had surgery and yes I would definitely say that I have and still do mourn my good health and the life I had "before". I put up a great act and most everyone in my real life has no idea how difficult this adjustment to my "new normal" is.

Yes it was benign, yes I did recover, but I still live with the notion that it could return. I still live with facial problems and deafness. My day to day life has changed and most days I accept it and just live but there are those days, even 3 years later, where I get mad or sad or just damn frustrated.

Jim, you are lucky. The grief process is different for everyone and that's what makes us unique.

Phyl, thanks for the link.

[pearl]

I am new to the site and turned here for help or confirmation about my status three months after my AN surgery.  I lost all hearing in my right ear and still have ringing, dizziness and fatigue.  Prior to the surgery I was very physically active.  But to complicate the AN I also had a pituitary tumor.  Because that one was an emergency, I had that surgery first (they removed it through my nose).  I had two trips to the hospitals with that one in April 2006.  Then I had a follow-up MRI in September 2006, which showed that the AN had grown from a small to mid-size tumor.  I had that surgery (above the ear approach) Dec. 4, 2006.  It's 3 months later and I've geared back up at work, and have tried getting back into yoga (which used to be a mere chaser to a heavier workout).  But I'm very tired, and can get depressed, especially since my very active husband seems ready for me to gear back up on every level and I'm just not up to it.  One doctor prescribed a variety of medications to help with the on-going dizziness.  I quit the diuretic after a few days because the side effects were so bad.  I do take meclizine once and a while but it makes me tired.  The drug I have not started that she prescribed to help with dizziness and balance is Lexapro, which is an anti-depressant.  I just read the side effects and they seem to include all the symptoms I already have so I can't get too excited about starting with those.  I'm interested in learning about others' experiences in general and with any of these medications.  Thank you.

[jerseygirl]

Pearl,

This is quite a story you have here! When you say the pituitary tumor was removed through the nose, I presume it means endoscopically. When I had my first surgery at NYU in 1988, I saw a number of pituitary patients, and ,OMG, I almost felt privileged to have had an AN rather than pituitary tumor. The old fashioned approaches to remove pituitary those days were horrific, the patients had all kinds of problems, all of them. I am so happy that everything worked out for you.

If you have any residual endocrinological problems, that could be contributing towards your fatigue. As most ANers know, fatigue in turn, increases balance problems and tinnutis. So, you might have more going on here than somebody with just one AN. I also had problems with just about all medications ever prescribed. However, the antidepressant is absolutely worth trying because it increases your coping skills to the level where it offsets any increases in tinnutis and anything else. Keep in mind that you might have to play around with a dosage and might even want to try half of a minimum dosage. It worked for me better than a regular one. Also, there are many anti-depressants now on the market, so don't give up and explore that possibility fully. It has a huge potential to help you rebuild your life.

For me, tinnutis has been helped by Gingko Biloba. It was an accidental finding as I took it to help with memory. I know the studies have been inconclusive but if it works for me than it is very significant, both statistically and realistically. You have to be careful with it if you have a tendency to bleed easily or are on any blood-thinning medications because it might prolong bleeding. Also, not every brand works for me. Ginkoba and Solaray do but Trader Joe's barely does it. I stick with Ginkoba because it has been used in a few trials.

Regarding exercise, I discovered that I never felt like I had any energy to start but if I did anyway, I felt better and the effect was cumulative, that is, after a few months, I felt A LOT better. I had to learn though that I could not push myself like before and had to take it slowly.

Best of luck to you and keep us posted!

                           Eve

[Dealy]

Phyl and ANA Gang: I read this thread this morn and had too reflect on it all day. I remember as a young man where money and prestige etc. was the most important thing in my life. However-without your health-what do you really have-nothing. How many people have had to learn the hard way-including myself. So all the money-prestige means nothing too me now. I have had 2 years to reflect since my initial diagnosis. People expect you too be well today. That is how our society is become-quick fix. Look at the commercials on TV. Their is a pill almost for every condition and they act like-you take this and you will be good as new. What a sell job. That is why I now condone that we should always tell our friends-family-and yes even our enemies that we loVE them because we never know if this will be THEIR last day or not. I like this forum because people like you PHyl-you can tell you really care about people. I was so sad too hear about the lady from Boston.. Now her job is secondary. When I was getting treatment at Johns Hopkins we had too wait in the Oncology ward for our turn on radiation machine. One day I heard this scream and moan from down the corridor. In almost 10 minutes they were wheeling this patient WHICH i could not tell if they were male or female-because this person had chemo and then radiation and obviously was in pain-now my AN problem seemed pretty minor at that time. What comes first for me now is #1 My God and #2 MY family-the rest you can all leave behind as straw. Thanks always for your input and concern-and thanks for you all for letting me say what is really in my heart for all on this group no matter your current status. WE ARE FAIMLY AND ALL ARE ONE-THANKS-RON

[Jim Scott]

Pembo:

I would agree with you that we all mourn differently and that I'm 'lucky' in that I've adjusted to losing my formerly excellent hearing in one ear - with all the ramifications that brings - and that I no longer have the same level of stamina that I had prior to my AN diagnosis and surgery/radiation in '06. 

A lot of that ability to adjust is based on the fact that I'm a Christian and so, do not consider my mortal life on this earth to be the whole of my being.  However, I usually avoid mentioning this because I know we have a diverse membership and I do not wish to veer off into 'religious' debates.  In addition to spiritual factors, I'm otherwise healthy, have a very stable marriage (37 years) and 'support system', which, as we all realize, is a genuine asset in the recovery process.   

As I mentioned, I certainly did mourn the loss of my near-perfect health but my faith, my work and family situation along with my age and the perspective that gave me all combined to allow me to adjust and move on and enjoy the years I have left, which I expect to be many (my father lived to age 92).    I also realize that a younger person will have a different perspective but the fact remains that at some point, one must 'adjust' to reality and to refuse to do so is detrimental to our full recovery.  I'm just saying.

Jim

[Sheryl]

Phyl - Thank you so much for posting this story.  Unfortunately many of us can relate to it especially myself and my husband.  While "waiting and watching" my 9th cranial nerve schwannoma for the past five years, I developed breast cancer three years ago.  As of my third anniversary, I am still doing very well.  My husband, during this same time, found out he had another type of benign brain tumor called a "meningioma".  He had that removed as I was finishing my chemo getting ready for radiation in May of 2004 - talk about a full plate!!  Unfortunately he has had a regrowth and is still contemplating what to do as he is completely against another surgery and cyberknife or any kind of radiation alone would only give him a 50% chance of not having this tumor return a third time.  We constantly talk about the "good 'ol healthy days" and some times laugh and some times cry.  I often wonder why I didn't stop and smell the flowers more when I was "healthy". 

Anyway, two more months and we'll be back up your way for the summer (I hope).  We've been in touch with Dr. Black at the Brigham for a "New England" connection for my husband. 
Sheryl

[Dealy]

Jim Scott and Crew: Jim I certainly agree with you 100%. I guess I am at the stage in my life called the Golden Years where things that I thought were so important and not that significant anymore. I do not intend too put a damper on other people's beliefs and perspectives. We all need a reason to carry on with some kind of positive outllook in life. I read a article in our local paper how the public just seems too relish news about Britney Spears-Paris Hilton-Anne Nichole Smith-etc. The AP Press even tried for a day too see if people cared if they printed no news about the diasters of these people's lives. You guessed it-their experiment lasted one day. I would rather focus on the needs of people etc-and the positive aspects of their lives. So forgive me if I may have offended anyone on this forum for my outlook on certain things. No doubt my life has been altered by having an AN the 2nd time around and my hearing (barring a Miracle) will never be the same. However-my mother when she was still alive always told me "Well it could be worse". So I guess I will have too live with those words and except my fate-Thanks Alot-Ron.

[nancyann]

I've kept reading this post - didn't know how to reply.
Ron, when you said 'it could always be worse' -
I was at the ENT for my 8 month checkup - I seem to always
break down there - I'm asked 1 question & the flood gates open & I
can't stop crying (I really feel like a jerk when that happens) - geuss it's because
this is where it all started.... Anyway, as I'm leaving the office a man turned to me & said
'it could always be worse', I agreed with him as I continued to cry, get on the elevator...
as I'm walking toward the exit there are 2 stretchers with a young man on each one,
both had tracheostomies, both were not moving (don't know if they were concsious, didn't look like it) -
I think they may have been paralyzed from the neck down....Anyway, I was surprised to see them in the
outpt. area at closing time, never before have I seen stretchers in that area.   It helped me realize, yes,
'it could always be worse...'  So, I do mourn losing my health, not being able to do things like I use to,
but I'm still alive, working, able to stop & smell the roses....  'it could always be worse...'

[Denise]

Phyl,
I read the article and thank you for posting it.   I really can relate to Pembo's  comments, they are me almost to a T, except I was 43.  I know and realize everyone's outcome is different after AN treatment, regardless of which treatment you chose or was chosen for you.  I think it is very good for Newbies to see all the different results and to be able to talk or email with someone who has similar results from their treatment, or are trying to find what is best for them.

I do mourn for my previous good health, however, I try not too, but that unfortunately is part of my personality, genetic make up or whatever. I am almost two years post op, I have to look at my AN everyday (facial paralysis). While I have made some progress in that area, I still see it everyday.    I still have an very uncoordinated left side.  I have minimal hot/cold sensation or feel pain in my entire right side.  I can feel hot/cold in my fingertips, but it is not the same as pre-surgery. 

I am trying to come to terms with what has happened it's really hard.   Sometimes I am jealous of the "lucky" ones, I don't want to be but I must admit I am.   I try to be stong for my family and friends, and they all think I am doing great. I should get an academy award.  I try hard to get past all this but it really is hard when it is staring you in the face everyday.  I kept a journal in 2005 after my diagnosis, and yes, I can see that things are better now than then, but, its still really hard to adjust.

I think I am having a bad day, I apoligize for getting off topic. I did really like the article. Thanks again Phyl.

Denise

[nancyann]

Denise:  What you & Pembo said helps me realize it's okay to feel down sometimes;
you guys had this done before me - & still have your down days; so I don't get mad
at myself when I get angry, sad; I know I'll have my ups & downs & I thank you for
letting me realize this.
I look to you, Chris & Taylor re: the nerve graft in the future - I watch what you write,
how you're doing, signs of movement - & hope when/if my time comes I'll have the
strength to go thru it.  My ENT doc told me last week ' I will strongly recommend the nerve graft
if your nerve doesn't continue to show generation' (something to that effect).
Our journey is a long way from over;  I want to live the best I can; I want to have fun,
laugh alot, & maybe even find someone who sees me from the inside out.