35 replies to this topic

[HeatherZ]

This week (wed, 3/23) is my first cancerversary and what a year it has been.  For all of you that have been living with this for years, does it get emotionally easier than the first year?  I know I will probably never forget the date but the last few weeks have been rough emotionally thinking about the date coming up.  My husband has been teasing me because I can't even remember our wedding anniversary without looking at the date inside my wedding band yet I don't think I will ever forget the date of my cancerversary.  I am sure it will get easier as time goes by; I am still new at all this.  Does anyone have any traditions, or emotions, or anything when their cancerversary is rolling around?

Heather

dx 3/2010 G400 since

[jsmiddiebrush]

Heather - for most of us, YES! it gets easier!!  My husband is approaching 3 years now.  The first 6 months were really bad with side effects, emotional turmoil, the whole nine yards!!  Everything started to improve significanlty after six months.  By the beginning of year 2 were were at a much better place, emotionally and his side effects were fewer.  Now, after nearly 3 years, we've pretty well got a grasp back on life in general, he's doing well and has maintained MMR for more than a year, and is working full time again.  We are planning a trip to Ireland this summer!   I'll have to check the dates but we MAY actually be in Ireland on his 3 year "cancerversary"

And no, we don't have any traditions related to his diagnosis, which seem to come in bits and pieces:  A referreal to the oncologist,  an appointment with the oncologist, then some tests, then a followup appointment with the oncologiest at which point the tests weren't back yet....etc.

Everyone is different, but hang in there!  Things almost always get better with time!

[CallMeLucky]

Congratulations on making it through your first year.  I'm not too far behind you (about 3 mo) and I understand how you feel.

As far as ways to look at it, like anything else, I think it comes down to how you frame it and choose to see the situation.  This does mark one year that you have had cancer, but it also marks one year that you have survived, and I believe the name of the game is survival.  So I look forward to racking up as many cancerversaries as possible

When I think about it it seems like the 5 year mark will have significant impact.  If I am lucky enough to make it to 5 years (as of today I fully expect to) after that point you have to kind of live with the sense that you are on bonus time.  CML life exepctancy is 3 to 5 years untreated, so anything past 5 yrs really is a gift compliments of Dr. Drucker and all the other researchers out there who have made it possible for us to treat this disease!

Celebrate!

[jrsboo]

Thanks for posting this.  I am only at the 6 month mark and of course, feel like I am the only one struggling.  I know that it is not true, cognitively I know that.  But for some reason this week is hard emotionally.  I actually stared at my veins this morning in kind of a horror..........thinking about what is floating around in there that shouldn't be. 

Oh well.

This will get better. 

Just wanted to say thanks!

Caroline

[CallMeLucky]

"I actually stared at my veins this morning in kind of a  horror..........thinking about what is floating around in there that  shouldn't be."

I can understand that, I would think that way too, then I started to think about the Gleevec in there as well, kicking ass and taking names by running down all those Leukemic cells!  Visualization can work both ways!  I like to think of having a very well trained, albeit very expensive, special forces team in my body backing up my invaded immune system.  It gives a whole new meaning to the term "terrorist cell".  So I have my own little war going on, but so far the tests show that I'm winning, even if the "infrastructure" is taking a beating (speaking of beating, have I beaten this metaphor to death yet?)

I also remember early on I kept saying something like "I have to keep putting this poison in my body everyday", referring to Gleevec.  My mom stopped me one time and said "why do you keep calling it poison if it is saving your life?"  She was right, I had to change the way I was looking at things, if for no other reason than to just stop inflicting so much negativity on myself all the time.

Don't get me wrong I'm not all "think positive"  I'm mostly pessimistic and cynical, but I have tried to at least give optimism a fighting chance.  I used to stop myself from thinking positively, thinking "nothing good can come of this".  I still think negatively, but I also allow myself to think optimistically too.  Plenty of people do well on Gleevec and go on with their lives, the odds are actually in favor of that happening.  So why shouldn't that be me (or you)?

I hope your "down" is short and you bounce back up soon.....

[jrsboo]

Thanks everyone, sorry I co-opted your thread Heather.  My husband said the exact same thing to me Lucky, at breakfast this morning.  We were discussing this thread and I told him about the vein staring thing.........yes, as Billie can attest, I am mostly a bouncy happy person, something is totally off today though.  Just had what might have been a panic attack at the grocery store.  I was totally overwhelmed by the choices in the bread aisle.  Sigh. This is just not like me.

And I too think of it as "poison" as I choke down the pills at night.  Sometimes my throat just closes up at the thought of taking the Sprycel.

I wonder if it isn't because there was no symptoms of leukemia when I was diagnosed.  I felt fine and all of a sudden I have this horrible disease and now I have to take a pill or I will die.  It just doesn't seem possible.  I mean if I had had a heart attack, or a broken bone, I could see the need for medicine.  But I was just going for an annual check up.

Thanks for listening.  and thanks for the wonderful support.  You guys are the best virtual best friends!

[Tedsey]

Well, I just secretly celebrated that I was allowed another year with the ones I love (my 1st yr. just passed too).  Other than that, I did not want to make a big deal out of it--too depressing.  I see no point in celebrating a year with a deadly and incurable disease.  There are other things more worthy of celebration.  And now I find much more time to really celebrate even little happinesses!

I have to admit, the year that I was dx was the worst in my life.  I am glad it is over.  Things are much better emotionally.  But I don't know if it is realistic to think this monkey, (on our back), won't give us a big bite from time to time.  So, I just figure I will roll with the punches as long as I can.

Here is my take on why you forget your wedding anniversary.  It is about life, beginnings and going forward.  Normally we don't give that deep thought.  A cancerversary is a loud alarm that we are indeed mortal (easy to forget when you are well, unless you are 80---most CMLers have to deal with this developmental stage a lot sooner--i.e. we fast forward to the concerns of people nearing the end of their lives due to old age).  Culturally, this illness emphasizes an end instead of a beginning.  But hopefully this is not going to be true for us.  For me, it has felt like waiting to be sentenced (well, what I imagine it feels like).  How could we forget we are incarcerated (incancerated--sorry, bad joke)? Cancer brands deeper into your gray matter, (dare say psyche?), and is much more of a threat to our continuation than years of marriage (I think I am opening myself up for a better joke here--I guess this depends on how happily married you are).

Nevertheless, while serving life in prison, people get Ph.Ds, law degrees, or find God.  Sometimes they are exonerated and set free. 

P.S. Maybe it is a good thing I am in therapy and on Zoloft. Both have really helped.  Perhaps that is all I should have said.

[knoppl]

I was diagnosed about 15 months ago. The first year was so hard. It has gotten much better but I still go through times, and am recently, where I think about having cml so much and going through the why again. I am lucky since I have had little myelosuppression and generally tolerate Gleevec ok but keep waiting for a big bomb to drop, not sure why). It is hard to be positive all of the time but I do try. I truly hate cancer. I am a diabetes nurse and teach in the hospital that is also the cancer centre. Too often I see cancer patients and it all comes a little too close to home. I have one fellow who has lymphoma and was told that all they could do was support him with palliative care. He went for a second opinion and he has a 50/50 chance of living after his transplant. This has been the hardest patient I have had to see, way to close to home. A bit off topic but has been on my mind.  I worry about losing response to the Gleevec, the possibility of changing drugs one day, it goes on and on some days. I think we all run through some of these thoughts and fears and am so glad that this is one place that I can come and chat about them with others who know all too well how cml haunts us.

[Marnie]

Hey, Heather. . .I'm coming up on cancerversary #2.  #1 was difficult.  I guess the hardest part was that it was such a big day for me, but not for anyone else.  No one else really understands how it feels. 

Yes, the years get easier, I think.  Susan61 would be the one who knows, as she's the real pioneer here.  I guess I have a better handle now on exactly how I feel about things and on how I want others to treat me. . .though I haven't found all of the answers yet.  I imagine that we'll all be working through that one forever.

As long as I continue to live with the mantra of "Life is the important thing. . .quit putting so much time an energy into work and focus on what really matters". . .I'm pretty much o.k. with how things are going.  As for what will come eventually. . .not going to worry about that until it gets here.

Marnie

[HeatherZ]

Thank you all for responding and Caroline - I don't mind my posts being hijacked

It is so comforting to know that I am not the only one with so many conflicting emotions.   I have also gone through the whole war within my body between the taliban cancer cells and the special forces Gleevec thoughts.  I also think, like Lucky, that 5 will probably feel pretty significant and I am looking forward to it (in a strange sort of way).  Lucky - I think you and I think the same way; more pessimistic and cynical than anything else.  I am so glad that I found these boards because even though I have not posted too much I now consider you all the best virtual friends I could have.  It has been one tough year and I am so glad I have the understanding and support of this community.  I look forward to the banter when the controversial topics get brought up and I love when we can all celebrate a milestone with someone.  Of course I also like to see Phil's picture because that feather can make me laugh no matter how crappy I feel!

[HeatherZ]

Teds - I like your take on things.  I have to say the analogy to prison and cancer is funny to me because my husband is a Corrections Officer.  My wedding date should be easy to remember because there are a lot of aweful things that share the same date - April 20th.  Or maybe it has just been so long that we have been together that the date is overshadowed by the memories.  We've been together for 21 years and this year will be our 15th wedding anniversary.

Oh - and I'm on Zoloft too - have been for many years.  Post Partum Depression was horrible and I was hospitalized with a psychotic episode.  In a weird way I think the emotional turmoil I went through with PPD prepared me for this journey.  I am more aware of my mood and emotions on a day to day basis and am able to quickly notice if something is changing for the worse.  I have not sunk into a deep depression at all this first year of cancer and I consider that an achievement.

[PhilB]

The picture with the feather was definitely one of my best moves.  I really don't like to think of what Trey might be abusing me about instead if he didn't have that as a target.

Regarding the anniversary, my first one was a really big thing for me - complete with a severe mangling of Henry V (was that really a whole year ago?).  My second I actually missed entirely as I was too busy getting on with life to notice it.  You can indeed get used to hanging if you hang long enough.

[rickpister]

I am scared to think what happens after the five-year mark. I keep thinking about the older gentlemen with CML my oncologist introduced me to after my diagnosis. He was diagnosed in 1995.  Hope does me some good but, like many of you, I am scared too.

[lala]

hi-----I just hit my 5 year mark-----believe it or not, I only know the month--not the date ---you all will get there and feel the relief....   :-)   I took Trey's advice and asked my doc to prescribe my G two times a day-2 pills each time.  I take them after lunch and dinner, and  I FEEL BETTER!!!!  For five long years I suffered the side effects that really limited my life-----with the new med plan, I feel energy coming back!!!!  THANKS, TREY!!!!!    I am sending my positive thoughts to all of you--I do think they work----I hope you all believe that you, too, will forget the actual date and just be busy living life as normally as the G allows!  It is a new normal, for sure!  I became a grandma in September---at 53----it is wonderful!  :-)  Five years ago, I hoped to get my youngest through college.....now, no worries, I will live to be an old lady!!!!!  Hope this brings you all some hope to hang on to when the deep fatigue hits you!  Remember, it will come and it will go.  Happy spring!  ~Lala

[sferrazza]

Hi,

I just celebrated my one year anniversary on March 4.  I had a cancer sucks party with all of my closest girlfriends and we laughed until 2 in the morning.  I just found this sight today and now feel like I have a place to vent, laugh and share my issues.  How are you feeling daily, are you working, what drugs are you taking?  Am I being too personal, sorry I'm just so happy to find someone else in my position, my friends and family are great but I think they get sick of me crabbing and don't understand what it's like to have the BIG C!

Susan

[CallMeLucky]

Welcome Susan glad you found us (sorry you had to find us:) )

I think you'll find as you read through some of the posts, that we don't really have "personal questions" here.  We're all in it together, the good, the bad, and the disgusting!  I have yet to come across a topic that is off limits.  If you're thinking it or experiencing it, chances are most likely someone else here is too.  And even if they are not, we are all here to support each other.  So please jump in the mix and feel free to start a new post and let us know more about you!

[jrsboo]

Dear Susan,

What Lucky said!  We here are virtual best friends, and can share about anything!  To answer your questions, I am 6 months in, am taking Sprycel 100 mg per day.  I work only part time.  I am an attorney but cannot concentrate anymore and just can't do what I used to do.  So I putter around some, work one or two days a week for a couple of hours at a time, and try to conquer each day as it comes.  I am experiencing side effects that pop up daily and range from tongue lesions to fatigue to bone pain (although knock on wood, haven't needed the morphine for pain in almost a month!!!).   Each day seems completely different than the one before, and I cannot get a rhythm down that works, I was such a creature of habit, sigh.  But life is still full of funny moments, and happiness and joy.

Caroline

[sferrazza]

thank you for welcoming me!  I feel the same way.  Everyday is a mystery, will I feel ok, will I have a headache, will I be nauseous.  When I was first diagnosed my Onc told me  I was lucky because CML was the best Leukemia to have.  I would live a normal life and things would get back to normal.  I've been waiting a year for that to happen and normal for me has not set in.  18 months ago I was teaching special education preschool, running 25 to 30 miles a week, taking care of my kids and house and feeling great, except when I got the severe upper respiratory problems that I had.  Now I feel sick most of the time, severe fatigue and the onc is asking me if the fatigue is caused by depression!  Maybe but depression isn't causing the nauseous feeling and the itchy skin and all of the other crap that goes along with this.  UGH sorry, it's just that I've never talked to anyone who could possibly understand what it's like to deal with this.  I've been kind of down lately and having trouble getting back to that happy place.

[grannyd]

Good morning, I too deal with depression & anxiety!!! I take lexapro & ativan, can't say they help or not!!! Only 8 weeks into this, have posted before about all this. I know if I have to have any " BIG C " this is the one to have but---- having a really hard time with depression with having it!!! I am on tasigna & the only side effect I have is being tired in the afternoon, & for that I am sooooo grateful!!! NOW, if I could get out of this depressed state, and get back to life as normal I'm sure my family & I would be happier. Have to keep the T.V. on 24/7. I only leave the house for dr. appointments. I feel so bad because of all the people who are having so many side effects, then I feel guilty for being depressed, What a roller coaster of emotions!!! I check this board daily, read everything I can on CML, just need for my mind to slow down & take a break away from all this but can't seem to!!! Hoping that as the weeks pass I can get out of this rut & live as normal a life as possible. Don't mean to go on & on but this really is the only place to go to I know people understand my depression!!! Thanks for being here to vent to!!! all of you people are GREAT!!!!!!! thanks for posting your feelings & for listening!!!! prayers to all----grannyd

[HeatherZ]

Hi Susan,

Just like Lucky said, there is nothing too personal for this board.  We have been known to make up a whole soap opers story lines around GI issues.   (Days of Our Sharts)  I am taking 400mg of Gleevec once a day.  In the beginning my side effects were pretty tough to deal with but it has gotten a lot better.  I work full time and have two kids (12 and 10) to take care of along with a husband and 2 dogs.  After being on the meds for about 2 months, I ended up taking a couple months off work using short term disability.  The bone pain was really bad and I was so tired it was making me miss a lot of work anyway.  The time off really helped me emotionally and physically because I had time to adjust to the meds while being able to sleep if I needed to or take pain killers or whatever.  It happened to be over the summer so I got to spend more time with my kids which I think was good for all of us.  I think when we get this kind of news we forget how it affects the other people in our life because we need to focus on ourselves.  Well when you have kids your life is so intertwined with theirs that you have to remember the effects it is having on them.  I can still remember the look on my son's face when I tasted his Rita's - it was about a month after my dx and we were in the car and were all eating Rita's.  He had Swedish Fish and I asked if I could have a taste.  He said yes so I took his spoon and tasted it.  When I tried to hand the cup back to him he got this petrified look on his face and said he didn't want any more and I could have the rest.  It was then that I realized I had not done a good enough job explaining there was no way for my kids to get this disease from sharing food or drink with me.  But anyway, I have been back at work full time since September and it is okay.  I am definitely more tired and I still have occaional days of bone pain but have not had to miss work because of it.  I also deal with the brain fog and some days it gets rough.  This community is great place to be.

Heather

dx 3/2010 G400 since