15 replies to this topic

[CallMeLucky]

Man I am having a tough time, I just can't get my head straight.  Heard something tonight that really took some wind out of my sails, not that I was doing well to begin with.  My neighbor asked how I was doing and asked if I was in remission.  I was surprised because I didn't know she knew about my illness, I figured my wife must have mentioned it.  When I told my wife she was upset because she said she never told anyone on our street.  She has always wanted to keep it to ourselves and has always been worried our kids would find out.  Our next door neighbors are the only ones who know because we are pretty good friends with them and they were there when I was going through diagnosis.  So my wife called to ask if they had told anyone.  The wife said no but then she took the phone away and asked her husband who was obviously sitting next to her.  Anyway, they said they didn't tell anyone but we suspect they might have.  Not great but not the end of the world, at least not enough to make me lose sleep.  However I was blown away by something the neighbor said when she asked her husband.  She didn't say "did you tell anyone about his CML" or "did you tell anyone he has cancer" she said "did you tell anyone about his terminal illness".  I was really blown away by that.  They know I am in doing well and that my prognosis is really good.  I thought it was such a horrible and insensitive way to refer to me.  Is that how the people who know about my illness see me?  As the guy with the terminal illness and they are just waiting for me to die?

Now I know that people do not know enough about CML and they just hear leukemia and think what they think.  Normally it wouldn't bother me that much, but who wants to be thought of that way?  With such pity...as someone who is so pathetic?  WTF!

I think I would have just blown it off if it was just about the CML, but I just can't get this prostate cancer thing out of my head.  I know so far I have only had one abnormal test and the odds are in my favor with something like 60% chance it is not prostate cancer, but I just can't shake this bad feeling like something really bad is coming.  It has been so hard the last two and a half years, I can't even remember the person I was before or what it was like to not think about dying everyday.  I hate being this pathetic.  I hate being afraid.  I hate being sick.  I hate that people see me as sick.  I have busted my ass through every day of having CML to do what I have to do to take care of myself and my family and now I just feel like I am alone in dark cold water with sharks swimming around me, just waiting for one to pull me under.

I don't want to feel this way anymore and the most disheartening thing about all of this is that it doesn't matter what I think.  I have CML no matter what I do.  I may or may not have prostate cancer no matter what I do.  I just have to wait floating in the dark wishing for something to rescue me. 

[MJB]

I wish that I had some magic words to make it all better for you Lucky. Your strength, knowledge, compassion and determination are truly inspirational. That makes everything you have had to deal with these last few years even more unfair! 

But You are right, what will be will be. I know that somehow you will gather your strength and continue on. In the interim, I'll be floating right next to you incase you need a hand my friend.

Hang in there, it will be ok.

IForgot

[TeddyB]

So sorry to hear you feel this way CallMeLucky.

Not all people are sharks, if they are truly good neighbors they will treat you with respect and dignity.

I have taken a different approach to my disease, ive been very open about it, and ive felt really good about doing so.

Everyone handles the disease differently, but now that the "cat is out of the bag" for you, maybe its easier for you to talk to people about it, and explain to them how this disease is VERY treatable and that you probably will live to be an old man. It will be much worse if people start to speculate and start rumors.

Here in Norway, people are usually somewhat more open with their illnesses, at least people our age. I have told people i know that i have cancer, and that it is treatable, this way there wont be so much speculation and rumors like your "terminal illness". The response i usually get is that they are sorry to hear it, and then they start talking about someone they know who has cancer, and the treatments today are so good compared to lets say 10-20 years ago. Another good thing about being open, is that you truly see that a lot of people actually care a lot about you, this has given me a lot of much needed strength.

It must be extra difficult for you with this PC issue hanging over you, so right now i understand your frustration very much.

Everyone handles disease differently, but i just wanted to share my experiences of being open with my cancer, and that it has been very very good for me.

[LivingWellWithCML]

Hang in there Lucky - you gotta ignore those comments.  My annual physical is tomorrow, so I've got some anxiety about things like PSA, etc. - so I get that.  However, your prognosis is excellent, no matter how other seemingly "healthy" people view those of us who are living well with CML.  All of our friends, family, etc. know about my CML, but they look and treat me like nothing ever happened.  I am basically viewed/treated like I have been cured of the disease, and hey - that's exactly how I want it!  However, there's a component of education involved as well, which is why our friends/family are like this -- perhaps your friends just need to be reminded about CML and what it means to be responding well to treatment, and how that is different than other forms of cancer?  Optimal TKI response is anything from a terminal condition - as my CML specialist put it, you are "operationally cured".

I do get the occassional "how are you feeling?" -- but it's really genuine stuff, so my response is a standard, "I feel great, and as long as I'm treated succesfully, then I'm operationally cured and can move on with life."  I'm not always this 'up' about it, but I am working very hard on that attitude.

I'm with you, buddy ......

[scuba]

Gary wrote,

"I hate being this pathetic.  I hate being afraid.  I hate being sick."

... Then stop. Stop being pathetic, afraid and being sick. I know it's easy to say/write. But the reality is we are not sick. We're certainly not terminal as in getting ready to die. Are you getting ready to die?

I didn't think so.

Get busy living, Gary. Research CML, try different things to get both your mind and body around it, but most important - let those who know you, know that you licked this thing. You'll die of something else, not CML.

I recall in the early days of my own diagnosis, my wife cried when the doctor told us I had CML. I figured I had a great way to milk this and get out of all kinds of chores that my wife has me do. I would tell her, "I have Leukemia, whatever I did, it's not my fault". That worked for about a week. Now she tells me to "get over it" and to get my (*ss out there and do what she asked me to do. I get no sympathy. Not from her, and not from her sister (who found out almost as fast as my wife did).

So as Dan wrote above, you are "operationally cured". You really are - since you are PCRu or close to it. Get your mind around that and it will make you smile. Twenty years ago it was a different story. Not so today. Imagine what the next 10 years will bring.

[NotJack?]

Hey Lucky,

While I saw validity for both full disclosure, and no disclosure, I chose the former.  I found that some people never mention it again, some ask always how I am doing, and some have disappeared.  The ones who disappeared where not that close to begin with.  The ones that never mention it show their concern in other ways, and the ones who always ask either have the pitiful look, or the compassionate look of one who truly cares.  I guess that I realized that when confronted with their own mortality, people deal with it in the way that they have to deal with it.  You can't control how people react, you can either put it out there, or not.  I am sorry that someone took that choice away from you, but they were probably only dealing with their own fears, sharing it with others in order to help themselves deal with the topic.  As far as the PC,  I have been given the order by my dr to to the PC test,  he said it was up to me to determine what to do with it.  He said that he would probably get the test, but didn't know if he would go further with it than that.  He said that he would have to cross that bridge when he got there.  He was not convinced of the accuracy of the test, and said that drs tend to do more and more intrusive explorations to back up or deny the test.  Don't know which way I will go yet (probably take the d@#n thing),  but I support you in your choices, and pray (or whatever an atheist is allowed to do), that it all goes well.  Take care, and I hope that now that things are outed (in spite of the means), that you get all of the positive support that you should get from family and friends.  You know that you have it here, Jack

[jrsboo]

Dear Lucky,

It is mind numbingly frustrating to have CML.  To constantly be aware.  To constantly be vigilant.  To have your mortality handed to you on a plate every day as you take one or two pills (depending on which pill you take).  To wonder if that twinge or soreness or pain is something to really worry about, or is it just everyday stuff.  Having a second possible diagnosis of a major illness is inconceivable for most, and soul crushing for us.  It takes so much damn energy to keep going. 

But we do.  Our little group is AMAZING. 

Whether everyone knows, or no one knows. 

In my exactly two years of this diagnosis, I have only seen one person on the board want to give up.  One.  Pretty stinking amazing.

What I hear in your post is that you are tired.  Tired of being sick and tired.  And scared. 

I don't have the answer for you.  I wish I did.  I can only send warm hugs and empathy, to let you know that I know EXACTLY what you are going through.  I too have a second major illness hanging out there.  And I cope by forgetting about that one.  I have dr. appointments set up, and I will go to them.  But I just can't worry about any more of it.  I am still trying to fix all the injuries caused by the side effects of the pill I take, and there is only so much energy available for that too.

Have you considered telling a very good friend, or a professional "friend"?  There is quite a lot to be said about having someone really hear what you are going through.  I happen to be a great big fan of cognitive behavioral therapy.  To be handed a toolbox full of coping mechanisms by a professional is marvelous. 

With warm thoughts and energy,

Caroline

[CallMeLucky]

I appreciate all of the responses, I was tired last night and frustrated.  To clarify my thoughts a bit, I don't have too much trouble with CML in terms of how I see my long term prognosis.  I have read enough, I understand my response and after 2 and half years I can say that I accept having this as part of my life now and what it brings with it.  Where I am having trouble is with the pending diagnosis of a second cancer.  While that has not happened yet, I am very concerned about the abnormal test result I got.  It could be a fluke, it could be a benign issue, but ultimately something is not right and the thought of having to tackle another cancer diagnosis is taking a toll on me.  The comment by the neighbor just triggered me.  Two months ago if I heard her say that I would have laughed and said "she doesn't know what the hell she is talking about".  Instead, in what I recognize is complete irrationality, I heard a premonition.  There have been little things here and there that have been said to me or I have heard in passing that are just giving me a bad feeling.  I recognize many of the underlying causes.  I am overly sensitive to death after being diagnosed with leukemia, then having my brother in law die unexpectedly, then my father in law from a very aggressive and fast moving cancer.  I have arranged two funerals this year and I can't get it out of my head.  Add to that the physical side of things.  Every muscle in my body hurts, which just feeds into the worry - is it the Gleevec or something else?  I know now that I need to get off of Gleevec and try something else.  I'm willing to take a chance and not feel like this.  I can always go back.  But I also know I need to handle one thing at a time and I first have to deal with the prostate test issue.  I see my onc next week and the urologist the week after.  I will be waiting to hear back on my PCR and the PSA test at the same time.  It's times like this I wish I drank.  That of course is the kicker, don't drink, don't smoke, etc.

Thanks

[BY196]

Hi Lucky:

First off, your neighbor is just clueless. We are not terminal. For right now, our disease is not curable. But a terminal illness ends in death, from that illness.  We have good reason to be hopeful on that account. It seems like your neighbor is not very sophisticated and inadvertently used a much darker term than was appropriate. Or perhaps she's fond of drama and regular chronic phase CML didn't provide enough of it.

On your other issues, I totally sympathize. I have developed bad spine pain radiating through my ribs which may be a form of spinal arthritis and I don't have the energy to get it worked up. The truth is, I'm not sure I want to hear that I have another serious condition. Shouldn't we get some kind of free pass now, a get out of jail free card for other illnesses?

Every time something hurts or I get sick, I am convinced that I have another kind of cancer. (It doesn't help that my mom had breast and thyroid cancer in 2010.) I torment my sister, who is a radiation oncologist, with talk of my various symptoms. I worry A LOT.

Here are the things that are helping me manage the anxiety. I have not ruled out medication or therapy; I'm holding off on the former because I've had some bad endocrine side effects from TKIs, including debilitating lightheadedness which is a side effect of some antidepressants. Maybe you're already doing some or all of these things already . . . .

1.  Better eating habits: I actually started this when I was desperately trying to feel better from my side effects, but I've found that it has independently helped my emotional regulation and energy level. I have limited refined foods, especially sugar, and eat more fruits and vegetables.  I also take vitamins C and D, plus fish oil. I also make sure my blood sugar doesn't get too low, like from skipping meals. Once I do that, I become a teary mess.

2.  Exercise: Before dx, I was extremely active; I was even considering entering kickboxing tournaments and had signed up for a Tough Mudder race. Now, some days, all I can do is a couple minutes of plank and some stretching. I'm finally accepting that and letting go of the bitterness (ok, working on letting go). Exercise has outperformed antidepressants in studies of mild to moderate depression. It also helps me not to think of myself as totally broken.

3.  Meditation: I am just getting started with this but I'm taking a few minutes every day just to breathe and try to let go of thoughts, including anxious ones. The book Full Catastrophe Living by John Kabat-Zinn describes a mindfulness meditation program he pioneered for people with chronic illness. It came out many years ago but should still be available. It impressed me so much when I read it back then but I never had enough motivation to try it until recently.

4.  Help others: I find that helping others in a similar situation lifts my spirits. A friend was recently diagnosed with a rare neuroendocrine tumor and wanted to talk with me about how to address it with his kids. I was happy that my experience could help me help him, even if the circumstances for us both were far from ideal.

Hang in there--sending positive vibes your way (you're not far from me)

Beth

[scuba]

Gary,

Although a bit outside of this forum's scope:

http://www.cancer.or...-survival-rates

Survival rates for Prostate Cancer are outstanding assuming it hasn't metastasized (distant locales). PSA's would be off the charts if that were the case.

And unlike CML - Prostate Cancer is curable.

Just an aside to help you cope. I suspect you'll be fine. A nice glass of Scotch at the end of the day will take the edge off (JW Black or single malt).

[BY196]

Hi Lucky:

Switching drugs is daunting but I have to say that switching from Gleevec to Sprycel was a really good move for me. It's hard to pin down exactly what changed, since I continued to have fatigue and muscle pain (much of which then went away when I started taking thyroid hormone). My husband remarked that I was much more present with the family and my brain fog lifted almost completely. My kidney function also miraculously improved (no doctor had found an explanation for my high creatinine and GFR approaching mild renal failure). It might help and it won't hurt because, as you say, you can go back to Gleevec.

Beth

[TeddyB]

Im with scuba on the Scotch.

Though i have only had wine since dx

I will however have a nice glass of Scotch if my 6 month pcr is good.

Im crossing my fingers and toes for you!

So sorry you are feeling down lately.

[GerryL]

Hi Lucky,

I think once you've been diagnosed with cancer, you kinda get the expectation that it could be another cancer when a test comes back showing something. I know I felt a bit that way when the Gyn found something during my colcoscopy. If cancer can hit once then why not again. Good luck with your PSA test, hopefully it will be normal.

[Happycat]

Man, I realize you like your neighbor, but how tactless can one be??  Sheesh!  I think you need to start a new post ala what not to say to a cancer patient, along the lines of "what not to say in earshot of...". What a boob! 

Shake it off, Gary. You realize that comment is messing with your head, which is a good first step. Take a deep breath, and let the fear go. I know that's hard to do, but the fear is just making you suffer more misery.

So, let's pretend for a moment.  If you do get a new cancer diagnosis, what will you do?  You know you're not going to give up, you've got too much to live for. So you will fight like hell, you know it. Focus on that, not the fear. Focus on what you'd have to do to win the fight. Research different options for treatment. Do something proactive. It will keep your mind off the fear.

I know this works, I've done it. When I was initially dx'd with leukemia, they thought it was acute and I was at a crisis point. I was remarkably dry-eyed throughout the whole thing, mainly because I wasn't ready to go yet, and was only looking at how I/we could solve this problem. I just didn't have the time to waste on fear.

HTH,

Traci

[Tedsey]

You with your "terminal illness" may outlive them--you were very low risk to begin with, (but they are couldn't know this).  Although you considered yourself to be "good friends" with them, take a moment to consider the source.  I honestly think, that if a person is incapable empathy towards someone in our situation or has/had such an experience themselves, it is very difficult to understand what you are going through, (or may not really want to).  Cancer is terrifying.  For most, thanks to Hollywood, et. al., it means six feet under...period.  When people know you have it, it can be like wearing the scarlet letter upon our chest, despite peoples' best efforts to think of us and treat us the same.  And there is a certain arrogance that I have noticed some people have when they see themselves as "healthy", and look down on you, the unfortunate sick who needs their pity.  But mostly I think it is fear that drives this cocky, condescending attitude.  And who of all is the bravest and the strong?  Well, it is those who must deal with adversity every day and still come out strong, (you).  I think not everyone can do this.

Sadly, sometimes in life we come to learn that those we trusted are not trustworthy, or see us much differently than we thought.  It feels to me like a betrayal (No!  Wait!  That's not me!  Or is it?  Of course not!----They are misguided and misunderstand.  But you cannot educate or waste your precious time re-educating the world).  So, now we know where we stand with them and the limits of their empathy, understanding and intelligence.  Then we pick up the pieces and move on.  If they are waiting for you to die, they may not have enough time themselves and will beat you to the punch.  So if anyone thinks like this, it is just proof of his denial that he was born mortal.

On the other hand, she could have messed up on the meaning of "terminal" and really meant "chronic".  She may not even know what terminal really means, or chronic for that matter.  And we cannot control how others think of us (no matter how wrong they are and what we do to correct it).  For example, people may hate your face for no logical reason.  No matter how good, kind, thoughtful, hard-working, helpful and compassionate you are, it will be lost upon them.  That is because they are incapable, for whatever reason, of knowing who you are.  All I can say is, stick with those you know do.  The list may be short, and if I can venture a guess, it always is.  Not that you are going to kick the bucket any time soon, but someone I respect and admire told me if you could have just six close friends to be the pallbearers for your casket, you have done extremely well.

Lucky, I know how you feel.  I go through absolutely the same thing you do every day.  I still have numbskulls I don't know coming up to me at weddings and such (in the middle of training or dancing all night asking me 3 years later "how I am feeeeeling".  It is disheartening that not only I, but others cannot let me have a moment's peace away from CML.  As my Sokol score was high risk, and my doc doesn't consider me MMR (after 3 years and on Sprycel), and my first onc was just short of signing my death certificate early if I didn't get an SCT pronto, I often feel like I am just waiting for the drugs to stop working.  It is terrifying.  Of course, when we hear the tiniest bit of uncomfortable news, we automatically think the worst.  We have been programmed to do so because of our life experiences and how sensitive we came out.  And a cancer dx is alone the big wham-o as the mother of all horrible life experiences.  Just understand that if the odds are high in your favor, you will likely not be in the minority.  And even those in the worst situations beat the odds.  I had one as an honored guest in my house tonight (a sustainable energy group member, who I care very much about, beat a "terminal" lymphoma over a quarter century ago).

I wish you peace in life, Lucky.  You are in my thoughts and I send every good wish to you.  You have had it tough and have been through a lot, yet you remain extremely strong. I think you deserve good luck and good health.  You are such a kind and intelligent human being.  I think the type of person you are is rare and precious.  So being, there are not many people who could ever truly understand who you really are.  I am not sure if that gives comfort or just adds to the frustration.  But I believe those who are very great are often very greatly misunderstood.

Big hugs to you and your family.  You all deserve to outlive this monster.  Here is to the staying power of your good health,

Teds