8 replies to this topic

[Taylor]

Hi all,

I'm coming up fast on my first cancerversary on January 31st of this year, so I get to ring in the new year and then look forward to that.

I've been doing well as far as the CML is concerned; a Sept 6th bone marrow sample yielded PCRU on a quantitative analysis. 

However, emotionally it has been much more difficult than I realized.  I handled everything the first couple of months with what used to be my normal grace under fire.  Two days after I left the hospital I started a new, full-time job, then I got engaged a month or so later, then I got married last month, I converted to the Catholic Church in September, and a few other things happened.  There's been a lot of big milestones this year and it wore on me--I had a panic attack in March, my first one ever, then several subsequent panic and anxiety related things during the day and even waking me up at night, really reaching their peak at the first of May and continuing until basically the end of October.

During late summer/early fall, I began to see a counselor for this and learn some other techniques on my own to deal with it--I used some Ativan until then but not much.  Anyway, things are now mostly under control.  I still have blips on the radar, but now I can just focus for a few minutes and calm down and not have any incidents to write home about.  I do notice that being too fatigued (so, the usual) gives me more problems, as does being overstimulated.

Even though my life is pretty calm now and also I can deal with this anxiety which still lingers, I get frustrated that it's still there and don't know how to completely eradicate it.  I'm not sure if I need time to heal this wound, or what.  Maybe I even have a form of post-traumatic stress disorder, a mild form.  Who knows?

In any case, does it get easier?  Did it take anyone else a while to completely settle?  An advice for you multi-year patients?

Thank you for all the input.

[hannibellemo]

Wow, Taylor, it's not really recommended to go through most of the major life stressors in one year !   I'm not surprised you had a few panic attacks along the way but it sounds like you handled them and your dealing pretty well right now.

It does get better. You'll find you wake up and, "OMG, I have CML!!", is not the first thought you have. Eventually, you might not think about it until your phone alarm goes off to remind you to take your pill (or whatever reminder you use).

Then again, there may be stupid little things along the way like when I absolutely freaked out because my WBCs were smack dab in the middle of the normal range, only I'd gotten used to them being just a little below normal. So if they'd been 3.9,  then 6 weeks later they were 4.7, then another 6 weeks they were 6.1 (I had a cold) what would keep them from being 15,000, then 48,000, then...(anyway, you get the picture). By the way, this last time they were 5.3.

Sounds to me like you are completely CML normal!  I'm not trying to make light of anxiety, I have had major panic attacks since I was in my mid-20s (I'm 60 now) but, I guess, like you, I chose to address them and get on with my life.

Take care, Taylor, and congratulations on your wedding and your new job! I suppose someday we'll be congratulating you on your first child! (Breathe deeply, now)

Pat

[jjg]

Hey Taylor,

Our timelines are pretty similar, I was dx before you but started treatment after, got engaged and married in between + one very important other thing. Maybe because everything was so so condensed I feel quite calm coming up to one year dx. It is in two days and I haven't thought much about it. Unlike you my dx was slow so we've had  some anniversaries such as the BMB already.

A very traumatic dx followed by a  successful treatment that doesn't actually cure is a sure recipe for anxiety.... so no problem with you being normal, it's probably more weird that I'm doing a great imitation of calm.

I have had a little practice with an anniversary which might be helping. When I was 10 there was a major wildfire that took our house and we were extremely lucky to escape, as in the paint was burnt off our car; just up the road two fire trucks didn't escape and there were many others. The next year and for years after, around dusk at the same time as the wind change made the firestorm we'd go up the back of the property and look across the hills where the fire came from, nobody would say anything much and then we'd walk back down into our new house...until one year we forgot. Mostly it would be cold and still and nothing like our memories. It would remind us of all that had happened in the year and most importantly that we were still a family.

Certainly on Wednesday I will be celebrating how awesome my partner has been this year. Actually you know what, I really should take him out to dinner. We can celebrate one year of cancer bringing us closer together.

Maybe planning something to acknowledge the year will help.

[pammartin]

Wow, you had a boat load of changes in a very short time.  Because I am newly diagnosed myself, I can't say how long tern affects, but I have read many posts from others who begin to go about their lives as you have and CML take a back seat to important events in one's life.  I take xanax, not often, but I think it is more of a security blanket having it, instead of needing it often.  I think your choice of seeing a counselor was awesome, if you find a good fit (and sounds like you have) there are many positives one can gain from accepting help (without medication).  Panic attacks will come and go for those of us who have the unfortunate luck of experiencing them, but sounds to me like you are handling them well and you are handling them in a positive manner and moving forward in your life.  Congrats on your marriage, now there is an anniversary you can celebrate about! 

[Taylor]

Thank you all for the advice and encouragement!

I only had 7 days off this first year and I have to save those for honeymoon and sick time and to use the next day after something about Tasigna kept me up all night.  So, I haven't had a vacation really (I only had one day of time left for the honeymoon) since before I was diagnosed.  I'm sure that has had a lot to do with it to.  In February I'll get 17 days off for the year and going to take a week or so ASAP and RELAX!

Taylor

[Fas]

Hi Taylor,

I will soon celebrate my 10 anniversary of living with CML.  I don't really like the term cancerversary.  It does not work for me.  I refuse to give that word that kink of power in my life.  I will live with it, but it will not define me or my survival.  The journey gets easier in many ways and also the focus of the process just changes.  There will always be things to manage.  I still have side effects - they wax and wane and I have learned to deal with them.  Sometimes Gleevec just figures I am bored and throws something new in the mix to keep me on my toes. 

I agree that you have had a lot of life changing events happen in a short period of time and I think you are entitled to a bit of anxiety.   Let me tell you about my first anxiety episode.  Interestingly, I got very stressed out when I was released from the hospital and returned home.  The docs were running tests and I asked if I could go home and all the stuff they had to do be done out patient.  They said sure, go home - boy was I thrilled.  I walked into the house saw my husband, family, my life in the photos, my work briefcase, my dog, etc, and I had a full fledged anxiety attack.  I did not get it.  Why did this happen  at home, at the place I longed to be, felt safest and not in the scary hospital?  Realized a few days later I had no investment in the hospital or anyone there.  Being diagnosed was like an out of body experience for me- I felt disconnected from everything around me.  Everything and everyone that meant something to me hit me when I walked into my front door.  All of a sudden the disease, my surviving it and what I had to loose came face to face.  That provoked the anxiety for me, but it also mobilized me to fight for the life I had and wanted to continue to have.  So far, so good. 

It will get better Taylor.  Mostly, you will get better at managing the emotional and physical ups and downs of the journey. 

For me learning to meditate has done more than ativan ever did or could. 

Take good care and be kind to yourself, you are handling it just fine because you are living your life. 

Fran

[Trey]

Fran,

Eloquent.

[Vandyfan]

Taylor, that really is a lot for the first year.  I was 59 when I was diagnosed in the spring of 2010.  I was struggling to hold on to my job, agreeing to work part-time as our business declined due to the economy.  I had been focused on one son having no success in getting a career started and another son in early recovery after a terrible bout with addiction.  My one pillar of support was my energizer-bunny wife.  Then in May of this year she was diagnosed with breast cancer.  Some days it was all I could do to get to work then come home and take care of her thru surgery, chemo, radiation, and now lymphedema.  We, too, are persons of faith, and our church family has been most supportive. 

We will get through this and so will you.  I am struggling with the physical limitations (fatigue, GI, etc.) more than the emotional, but that is probably more my tendency to hold emotions in.  Also, it helps to be on Zoloft for a pre-existing depression.  One thing my wife said today struck me.  She observed that since she has had cancer she feels more free to tell people what she thinks.   It was so out of character that it really got my attention.

This is a different place we are in now, and there is little time to mourn the loss of the place where we were.  We have to learn to live, love, and find success in the world of CML.

[Fas]

Thanks Trey

- very kind