When Nothing Makes Sense

It is starting again.  I have seen the signs too many times before.  My wife's cancer has changed tactics and is doing something new.  I don't have any hard and fast evidence for this, only my instincts after 6 years of caregiving for her.  I was never like she was completely free of it, only that the new chemotherapy she has been on since November has been working so well.  Small tumors went away, the bigger ones reduced in size and continued to do so.  Her last PET scan showed that nothing had really changed in either direction.

So why am I worried?  Well because she is showing the same signs she has shown in the past:  lethargy, isolated but intense pain, depression, and a certain apathy towards doing anything or going anywhere.  All of these are the way previous intense damaging, horrible spells of sickness and hospitalizations started.

Believe me, I hope I am wrong.  But I've been through this so very many times before, that I twitch like a radio receiver.

So if I am right and we are about to enter a new realm of woe, what is there to do?  You would think I would be experienced, hardened, a veteran with that "100 mile stare".  But the truth of the matter is that no two cancer "incidences" are the same.  So I am just steeling myself and am scared as I am each of these times.  When she gets sick I always do the "what ifs":  What if she has to go to the emergency room?  What do I do with our son if he is at school, or at home?  What if she passes away?

That last question I delay even thinking about.  But I have covered it several times during previous episodes........and beyond the heartache what do you do?  I cannot fathom a life without her, she knows me better than I know myself.  I know that death is inevitable for us all, but to lose her now when we are both still young and have a lot of life left to go is painful.  How would I rebuild a life so shattered?  Some holes are just too big to be filled in.

Anyway, I realize I am waxing melancholy.........but I know something is wrong and I am scared and worried.  And after dealing with this for so long, it is not surprising that I turn over these things in my head from time to time.

As I stated above, I hope we learn it is nothing........or as close to nothing as some new scary medical problem can be for someone with advanced metastatic cancer.

But God I am scared.

New Life, Old problems

I haven't written on my blog in ages, as I stated in my last posting I wanted to spend time with my family and enjoying the newfound experience of stability and "normal" living.  So that is what I have been doing.  Taking my son to violin lessons, watching as he sings with his world-famous boys choir at venues around Atlanta (he will be touring in Russia in June), and experiencing all of his triumphs.

My wife has been getting out and about more than she ever did before:  shopping, starting Yoga, looking into going back to graduate school - something she dropped when she got sick 6 years ago.

I in turn have started exercising again.  Working out at the gym 3 days a week doing weight training, and doing cardio of some sort one day a week (so far this has been running, hiking or mountain biking).  As a result I feel more healthy than I have in a great while and have lost 10 lbs so far.

But I also have run into a dilemma that neither my wife nor I can really resolve.  You see........I suddenly have this wide avenue out in front of me.........and I do not know what to do.  I am paralyzed.  Before I was just taking care of my wife with her cancer and myriad symptoms and other than work and taking care of her I didn't spend a lot of time thinking about what was next.  I was living in the moment, because the moment was all I had.  Now I have the consideration of going back to school myself (maybe an international MBA, or even something else), or a career change..........or something even more radically different.  I just don't know.  It is not because I do not like my current career, I have an excellent job that has been super-supportive of me while I take care of my wife and there are career-advancing opportunities within my job.  But do I want to continue to do this job?  Do I want to try something different?  Maybe start a company or business of my own?  I have seriously considered it.  Being my own boss would be attractive.  But going back to school could also be good either to advance my career at my current job to the next level.........or launch myself into something completely new.

The frustrating thing is I just do not know what I want to do or how I want to go about it.  My wife is very encouraging and wants me to do something.  She can tell I am restless, but when I cannot tell her myself what I want to do..........what can I do?  I have reinvented my life so many times - so I am aware of what is possible:  I have been a drug addict, I have lived in poverty........and I have worked hard and turned my life around graduating from university and starting a career in IT that is the envy of many.

But what is frustrating is that I know my own potential, but I am just not sure what I want to do or what I should do.

Have any of you faced this?  What did you do?

An update

I have let this blog go very quiet for a while.  That isn't because I don't care or whatever...........my wife's health is just doing that good, that I decided to spend as much time with her as possible.  While she is doing well and can get out and about, I want to spend every moment with her.  We have had near miraculous recoveries before in her past, and they eventually end with tears and new health issues.  I hope that this good health continues and is maintained, but I will forever be looking over my shoulder.

It is nice to just be able to get out of the house, to go to the park..........to just do whatever you want and not have to take into consideration her cancer or other issues.

She is not cured, she still has cancer.........let me be clear.  But the chemotherapy she is on is making significant headway against the disease.  Small tumors are gone, and the bigger ones are reducing (albeit slowly) in size.

So if you are wondering where I've been I've been at the park, I've been enjoying my son's musical performances, I've been socially active and generally trying to experience "normality" for the first time in a long time.

Aaaaaaahhhhhhhh   :-)

Sensitive or Damage?

I have noticed some rather odd changes in my behavior towards things in the last few months and I do not know what to make of them.  Some of them have been coming along so gradually that I hadn't noticed them until now.

I believe the battle with my wife's cancer has changed me in ways that even I don't completely understand. With anything this traumatic it is to be expected, but I never expected these changes.

I have become emotionally sensitive.  Let me be clear this does not mean I weep in movies and at weddings or something silly like that.  But I have a low tolerance now for ugly, violent or obnoxious things.  So movies I might have watched a million times before like "There Will Be Blood" or anything with anger and violence I now cannot watch.  It isn't so much people being killed in the movie - I have watched several recently that didn't disturb me........it is the ones where someone is scheming and people get hurt (their livelihoods, losing family members, etc.) not just killed.  I don't freak out, but I will start to squirm if I am watching it and if it strikes a nerve I get up and walk away.

The same is true of books.  I am a major book lover, I read all the time.  But I have realized recently that some books on some subjects will upset me and renders it hard for me to finish the book.  I read The Girl with the Dragon Tattoo when my wife was recovering from brain surgery a few years ago and that was when I first experienced this.  The darkness in the book just grabbed me and I could not continue reading it.  It was never a great book to begin with, but I had never not been able to finish a book.

I am not concerned.  I have always been comfortable with who I am and the changes that have been wrought on me over the years.  But I am trying to decide if this is just a stress-related passing issue or if I will be wired this way going forward.  I can think of worse things than not exposing yourself to nastiness and violence, there is more than enough to go around this world.  And maybe it is good that through this I've gotten in touch with the more emotional side of my personality.

What do you think?

In all things there are blessings.

On 2011 and the future

I haven't had a whole lot of time of late to reflect on the past year.  But now that I find some breathing room I am struck by how quickly 2011 blew past but also all the detritus it brought with it or carried away with it.

At the beginning of the year my wife was fighting for her life against the invisible cancer that wracks her body and robs it of energy and life.  I find it ironic how her struggle mirrored to some extent the events around the world.  How the body politic of numerous countries finally tired of the tyranny they suffered and rose up against their governments and ousted long-time dictators from Tunisia to Egypt to Libya.  But just like my wife's battle against cancer, the fight never really ends does it?  She continues to battle and so do the proud and brave people of Syria, Bahrain and Yemen.  Maybe to some extent the battle never ends.

By the early Fall the revolutions of Tahrir and elsewhere had been largely successful and there was a sort of happy pause or glow.  So to did my wife's health improve a little and she had a bit more energy and more motivation.  Thus in our lives we took the opportunity to travel to Istanbul, Turkey to see a part of the world we had always wanted to see.  It was a phenomenal trip and I will forever remember the fun and things we did there.

But by early Winter the glow was gone.  Libya, Syria and Yemen had all descended into violence and Bahrain had ended it's nascent "Spring".  So too my wife's health took a dangerous turn for the worse with a sudden loss of weight and energy.  I think I was at my most fearful around the October to November time frame.

But just as Burma has seen an awakening long sought after, that resulted in the freeing from house arrest of Aung San Suu Kyi and the recent release of political prisoners - again it seems that things are moving in the right direction if fitfully.  My wife's health yet again bounced back and to some extent has not been so good or so strong in several years.  I march into a 2012 with more hope and vigor than I did, and I now realize that life and the travails of society closely mimic each other.  Yes, anyone can see a trend in any statistic or any event and I realize I am guilty of this too - but I hope you will indulge me this one time.

I hope 2012 moves more slowly than 2011.  I need some nice steady stability this year.

New Year and New Hopes

I haven't posted here for a while.  Maybe I'm getting "blog fatigue" or something of that nature.  I just find that with the holidays and the general ebb and flow of life that finding time to write here is difficult and sometimes I am not even sure what to write.  We all have a life and they all tend to get into a pattern, and even if the pattern is different for every single one of us once we are in it day in and day out, it becomes routine and we don't tend to leave the ruts we've created.

I hope any and all who read this had a wonderful  holiday season and a happy new year, I realize it may not have been a holiday season for everyone who reads this and for those suffering from disease and misfortune either themselves or their families I know that there really was no holiday at all.

Things are going well with my wife's battle with cancer right now.  This makes me very happy and buoyant, but I am under no illusions.  We have been at this point before and found ourselves back in the hospital or with some medical crisis again.  That isn't to say that I only look for the negative, but that my happiness is tempered by the reality of cancer and tinged by past tragedy.

It is amazing to think that only 4 months ago she was down to 86 lbs and lethargic and seemed to be fading.  That was when I put out my call for help in this blog and elsewhere and many people opened up to me and helped out in ways immeasurable.  It also corresponded with her starting a new chemotherapy called Votrient - it is another kinase inhibitor like the others mentioned in my previous blog entry found here.

In those 4 months she has gained most of her weight back, and the chemo has had remarkable results.  Small tumors that she had scattered throughout her body have disappeared altogether, and the large ones she had have all reduced in size significantly.  She is not out of the woods yet and she still is battling cancer, but things are trending in the right direction.  I just hope this chemo continues to work.  She has been on others that worked well for a while and then stopped working.  But this is the longest she has gone with one that continues to work and work very well.

Nothing has given me greater pleasure than listening to her talk about going back to graduate school - she was getting her PhD in Economics 7 years ago when her thyroid cancer returned in force.  But she feels that perhaps she was never meant for Economics and is not interested in maybe a J.D. in International Law.  I am over the moon hearing her plan her future and will stop at nothing to encourage her to do this.

So we go into the new year a lot healthier than last year and we are stronger and looking to a future that actually extends beyond just tomorrow.  I am excited, but cautious.

Pride

Despite all the problems in my life.  Despite the cancer and caregiving it is important to be thankful and humble sometimes when amazingly good things happen.

My son is growing so fast, too fast really........I need to figure out a way to slow time down.  Now that we're entering the Christmas season my son is doing a number of concerts, and I am so proud of him and his accomplishments.  His school orchestra has had several concerts both at his school and more recently they played at the Georgia Aquarium.  His violin playing is getting better and better, and it is nice seeing him play with his entire middle school.

And he has had 3 Choir concerts as well.  It is strange how I've been delivering him to his choir rehearsals every Tuesday and Thursday for months without really understanding how beautiful it was what he was working on.  So then I go to the concerts and I am stunned by the beautiful music and by the fact that my son sings so well.  He is singing songs in Latin, Spanish and German.

I realize this post is a shameless plug, but I cannot help it..........in the midst of disease and the fear of sickness comes these small blessings - like rays of sunlight breaking through the clouds and shining warm light on my face.

Beautiful.

Feeling trapped

One of the worst things about seizures is that the doctors tell you that after the event you cannot drive for 6 months - or rather until you've been seizure free for 6 months.  This leads to a terrible burden on the individual suffering the seizures and on the caregiver who without having done anything suddenly finds that in addition to all the other things they have to juggle, they now have to provide transport to the person they care for.

And naturally any new seizure resets the clock for another 6 months.  This is where I stand right now, with the latest saga of my wife's care.  It is hard enough as a caregiver to take care of someone suffering from cancer - it is quite another to take care of someone who has seizures and has cancer.  It can be very overwhelming.

She feels trapped.  She cannot go out of her own free will any longer, she has to rely on others to take her if the mood strikes her.  She doesn't want to be a burden on others so she will tend to not ask, which makes her feel even more trapped.  She is now having small seizures almost once or twice a week - given the treatments she has had to her brain he doctors can only surmise that the scarring and trauma has led to these seizures.  I as her caregiver need to figure out what the long-term prognosis is.  Will she have these seizures off and on for the rest of her life?  Is this something that will pass as any major brain treatments heal?  The prospect of this being like this for many years is daunting to say the least.

I feel trapped.  As the caregiver I now feel that I have as little freedom as she does.  I have to work, I have to take care of the house and family and finances...........and now I have to be her transport as well.  I now have even less time to do those things that keep my sanity.  I cannot go and "hang-out" with friends or even by myself because I have to make sure she is doing okay.  I cannot go kayaking for fear of her being home with seizures.  I need to get back into exercising, but again part of me is paralyzed into not acting because I don't want to be off somewhere doing something when she has a seizure or something bad happens.  So I cannot even do those things that give me a moment's respite.  And so we are both trapped like bugs in amber.  Unable to move forward in any meaningful way, and unable to go back to how things were.

It is true that my parents are here and are helping a lot - a great deal actually.  But my wife is a very private person which means that she sometimes will not even tell me when she is feeling bad or has had a seizure until we are alone together.  It is as if she doesn't want to bother others with her condition.  My parents can help provide transport for her to places she wants to go, but she won't ask them for fear of "putting them out" - which is just silly.

I am just not sure where all of this is heading.  I feel broken, the chemotherapy she is on is working very well and this is excellent news.  But can the news really be excellent if at the same time the chemotherapy is working on rolling back her cancer, this new seizure problem has cropped up and is affecting her mind?  Does winning one battle only to lose on a completely different front make me feel better?  It is horrid and I hate it.

Time Does Not Change Everyone

This past weekend I attended my high school reunion.  I have assiduously avoided almost all of the people I knew in high school all these years, as I had a very hard time while attending.  Not only did I almost not graduate, but many of the folks I attended high school with were cruel nasty people, churlish and a bad influence on me.  Through them I used drugs and abused alcohol both in high school and shortly afterwards.  All of the wonderful things that have occurred in my life came after graduation.

Talking to my wife I now know that many, many folks have wonderful high school experiences and use that positive experience as a springboard on to bigger and better things.  But I left high school an emotional wreck and went on for a short time to do a lot of self-abusive things.

But after these years I figured that I have changed a lot and been successful, why not go back for the reunion?  I shouldn't have bothered.  After all of these years it was like nothing had changed, many of the people who were in cliques all those years ago rapidly sought out and stood with the same folks - disdainfully looking down their noses at everyone else.  I am happy to say that many people there did not recognize me and I in turn honestly did not recognize a lot of folks either.

But after so many years can it be that people do not change at all - other than the passage of time and the changes it creates on our bodies?  I have been tempered by hardship, loss and now the titanic struggle to keep my wife alive through her cancer.  I feel that I am not that boy that graduated those years ago.  If anything I am a stronger and better person, but my entire persona has changed.  I doubt if I am even 15% of that person today.  Why do some people change and become more inclusive, while others stay frozen almost like a fly in amber after the passage of time?  The same friends, the same political views, the same disdain.....I honestly don't understand it.

I realize my blog is about caregiving, but I think it is fair to tackle some of these larger social questions as well.  What are your thoughts on this?

When the Ground Changes

I am worried that I have been stressed for so long and dealt with this horror for so long that I have lost something precious to me.......perspective.

My wife's health is turning in a positive direction.  For the second appointment in a row her blood levels are moving in a positive direction.  Her appetite is back and she is eating with a vengeance for the first time in a very long time.  She hasn't gained any noticeable weight, but she will.  The PET scans show the cancer is in full retreat due to this new chemotherapy (# 7 she has taken) which is different from all the others she has taken.  Several of the other chemos worked a little bit (e.g., reduction in tumors or slight reduction); but this chemo is knocking the stuffing out of it - small tumors are gone, big ones are significantly reduced in size and continuing to shrink.  My wife developed a tumor on the side of one of her fingers, when she was very sick it was large like a large wart and could be seen clearly.  We designated it her "canary in a coalmine" in the sense that it was the only tumor we had that we could see openly without a scan.  Since she has been on this new chemo the tumor on her finger has reduced to no more than a smudge (it isn't even raised) and I believe that in a short while it may actually disappear entirely.

My parents are now firmly ensconced in our house and have already become a major help with a ton of things for me.  As a result my stress should be lower and I should have more time to do things that are "normal".  Perhaps I will eventually, but I just can't seem to shake it.

I feel like someone thrown into deep water and pulled under.  After a long while I am finally coming to the surface - I burst to the surface gasping for breath, my lungs burning with the effort.  Water streaming into my eyes so I can't see.  I wipe the water from my eyes and look around and realize................I don't recognize the world around me any longer.  My son is a tween and is navigating all that pre-teen stuff and I honestly feel myself getting sucked into his emotions because my own nerves are like live electrical wires after a storm..........raw and dangerous and sparking over every little thing.  My wife is more active, is more alert and yet I feel like I've spent so much time taking care of her that I almost don't know her like I used to.  That isn't to say I don't completely love her, that can never change...........but I feel sometimes like I'm talking to her from a different place.  From just under the water or the surface (to take my analogy further), so we sometimes talk to each other for a long while and yet heard different things.

It isn't all bad.  This experience has honed me to a razor's edge...........I don't believe there is anything that will daunt me ever again.  When I deal with a crisis at work it seems petty and I'm able to see it from multiple angles and come up with solutions more quickly.  And when someone become irate, I feel like saying, "really?  You are upset about this little stupid thing, but in the grander scheme it is meaningless."

But when you've been underwater for so long, do you evolve?  Is that the problem?  Am I a Darwin experiment?  Did I grow gills and webbed feet and became comfortable down there in the dark with all the stress and pressure?  And now I'm back in the sunlight maybe I don't know how to climb onto land? 

I don't think I need therapy or anything, but I also am in uncharted territory.  Sure I've been happy before, sure there was a time when my family life did not include cancer..........but you can never go back to that exact moment.  And no matter how much the sun shines on me right now, at any moment I could be back underwater again - something that keeps me up at night and my stress artificially high.

I dream of peace.