Long (lonely) weekends

Long weekends can be lonely weekends now. Even though we are here, together. It can be lonely. Damon is off with friends until tomorrow. Drew has a friend visiting so he's busy. Many of our friends are busy. So, here we are....just Lou and I....hangin out. Lou is a little slow today, but that always seems to happen on the weekends. The weekdays are more active around here, not for Lou , but just in general. There's more of a routine, etc. All that helps. I have a movie for us to watch later and am making a nice dinner. These are the kinds of times I so wish we had more of when Lou was WELL....instead of the busy weekends we always had, not alot of alone time. Now too much alone time. Sigh. Why? When the kids were little, we used to drive downstate for most holiday weekends like this to see Lou's mom. The boys loved her house, playing in the yard, in the basement, and with all of her old toys. It was a great change of pace for them from the big city life. Drew would always hang her flag outside, he got a big kick out of that. I miss those days. But I would miss them anyway, whether Lou was sick or not. I loved hearing Drew calling to his Yia Yia from the yard, Damon laughing at whatever it was Drew was doing. They would run down the hill in her yard which seemed so big at the time, and land in her garden. Lou, always so proud of his boys, sitting on the screened in porch, smoking a cigar as he did some office work. Good times. Simple times. Sigh. Why? We'll never know why. We'll never know why this happened. Sigh. Cry. Why.

Prayers, please

As I write this, a dear man with a wife and four young children, is losing his battle with brain cancer. As I write this, another man with young children just lost his battle. As I write this, my dear friend Michelle's son is collecting ink cartridges to raise money for brain cancer research, because he lost his dad to it. As I write this, another dear friend, Cheri, is cleaning out her husband's closet, because he has been gone two months now. And it goes on and on and on, it never stops. A new person enters our online support group, and two pass on. I'm a "veteran" now at 19 months....pitiful. Tonight, I ache. I ache for all the children who have lost or are losing, a parent to this disease. I ache for all the wives who are losing or have lost their husbands, and husbands who have lost or are losing their wives. And parents of young children...BABIES who are fighting brain cancer. Please pray for all brain tumor patients. Please pray that a cure is found, soon. Thank you.

The tv habit

As I said on another day, we are watching alot more television these days. We didn't used to watch much tv before all this. But now, it is an easy diversion. Lou hasn't been able to read since he was diagnosed. He doesn't like being read to. Music is good, but not all the time. So, it's tv time. Even I am in the habit, and I really, for the most part, hate tv! So, the tv habit explains the extra poundage I'm carrying, but that's not why I'm writing about it. I'm writing about it because Lou said such a dear thing last night as we were sitting there. Mind you, we have been in the tv habit since winter I would say, every night, so it's a well established routine. Out of the blue, he says to me " We don't do this very often, do we?". "What do you mean?" I say. "We don't sit together and watch tv very often", he says. "It's nice". Sigh. Again I wonder, how does the mind work? How does LOU'S mind work? What must it be like to be LOU these days? But then I realize, it doesn't matter. It is what it is. It IS nice. He's right. Sitting together watching tv, something I truly avoided before, is now "nice". American Idol, tonight!

I wonder.....

This is the third day in a row I've written...perhaps it's too much? There's a thought that has been whirling around in my head for awhile now. I've had it many times throughout this journey, but it has become very clear to me lately. I wonder...... I wonder, if this had never happened, would I be spending so much time with Lou? I wonder, if this had never happened, would my sons have grown closer, as they have? I wonder, if this had never happened, would I have grown closer to my sons, as I have? I wonder, if this had never happened, would Drew be in grad school in Chicago (thus also helping the above two points to happen) ? I wonder, if this had never happened, would we have ever gotten any closer to Lou's family....? I wonder, if this had never happened, would we have grown closer to so many of our friends? I wonder, if this had never happened, would Damon have written an award winning poem (I do think so) I wonder, if this had never happened, would my girlfriends have become so dear to me? I wonder, if this had never happened, would I be so close to Anna, Audrey and their mother? (I like to think so) This horrible thing has brought about many good things. I like to think that most of these things would have happened on their own anyway. But I'm not SURE they would have. We'll never know. But I wonder, I just wonder.

Fresh Air

We live in a tall building in downtown Chicago. It takes a few elevators to get in and out. It's been a good place to be throughout this particular part of our lives because it is within walking distance of the hospital /doctors Lou sees, there are no stairs to worry about, it's an apartment and hence, is pretty easy to navigate, and it's close to all sorts of things including coffee, restaurants, theatre, movies, stores, churches, parks, the lake, and lots of people watching. The one draw back is that it is not so easy to get fresh air...particularly if you have a brain tumor and your recliner has become your security blanket. It's been difficult to get Lou out of late. The weather, at times, has not helped. But today was gorgeous. The windows were open, but that wasn't good enough. I was determined to get Lou OUT. Some dear friends in from out of town stopped by to visit. Lou was dressed and doing pretty well. After they left I said "lets go out for a walk, it's beautiful today ". Lou said, "well, I'm feeling kind of lazy today".........to which I said..."well, lets just go out for a short while, just around the block"........after much hemming and hawing, Lou says "well, ok, if that's what you want to do.....". I get the wheel chair....."what's that for" , he says. Oh dear...here we go. You see, Lou does not REMEMBER that he NEEDS a wheelchair. Well, I tell him we need a little " help", you know, just to get out of the building...... "I don't want to go out if I have to go in that", he says. Darn it. I can't possibly PUT him in the wheelchair, it takes cooperation!! More hemming and hawing. It would be so much easier NOT to go really. The elevators, doors, traffic, etc. He finally says ok. Hooray! I'm not so good with this wheelchair bit. We always get tangled up somehow in those darn foot rests! Finally we are out the door. It isn't so easy to wheel Lou.....he is not a small man after all..... I'm worn out just from getting out of the building. As we walk, he continually asks me if this is hurting my back......"not one bit" I say.....would I tell him if it WAS? NOOOOO...because I desperately want him to be OUT!!! It's my arms that hurt ....... we have a nice walk.....its a gorgeous spring evening......his favorite time of day, when daylight starts to fade.......we sit outside in front of our building, it's breezy and beautiful. It reminds me a bit of times we've had in London....sitting on the Thames, same time of day..... Lou liked to bring champagne to a special bench that has a great view of Big Ben. "This is nice", Lou says, "I"m glad we did this". I agree, it IS nice....it's really nice. I hate to go back in, but soon it starts to get chilly and it's time to go. I once again have a difficult time managing the elevators and doors.....but it was worth it. I ask Lou if he wants to do it again tomorrow and he says, "sure".........but tomorrow......we will start the process over.......it will be the " first" time he has been out in the wheelchair AGAIN.....it makes me tired just thinking about it......but I know, when the time comes.....I'll be up for it.......because it was nice......and Lou was glad we did it...as am I.

A day in the life

Before getting into the pithy stuff...I want to thank those of you who are actually reading this blog, and particularly those of you who are commenting! There does not seem to be a response mechanism that I can figure out, so I cannot respond to the individual comments, but suffice it to say, I appreciate your kind words, and knowing you are there, it means alot! Today began as a bad day. When Lou woke up, he was quite disoriented, it took him awhile to shake it. The disorientation progressed to sadness.....tears...and the questions began.....THOSE questions that I so hate...because they are so hard to answer...."what's wrong with me?" "What do the doctors say?" "What should I be doing that I'm not doing"....what can I be doing....why am I not at the office......it's so distressing, still....after going through this now hundreds of times.......thankfully, it does not happen too often, maybe just once a week or so. But it's heart breaking. Eventually, it passes. There are no good answers. If I told Lou he has a brain tumor, it would escalate into complete hysteria, which it has, because it is as if he is hearing it for the very first time. We just don't go there anymore, it isn't worth the aggravation to him...what's the point. He could suffer a heart attack right there on the spot. But it's hard to answer the questions....I've tried several ways.....once I even thought I'd tell him he had mad cow disease since he traveled to London so many times.....anything that might explain his condition in a way that might be a bit "acceptable" to him.....alas, nothing of course would be "acceptable". We are talking about a brilliant man who was a national collegiate debate champion, president of his student body in college, very successful business man, wonderful husband, father and friend, etc etc etc....what kind of brain disease that robs you of your MEMORY of all things, would possibly be "acceptable" ? I kid myself in trying to answer the questions...and somehow..we get through it. After many hugs and half a box of kleenex...it passes.....and the day starts.......again. But Lou doesn't know we have already had the first, "bad" start....... The rest of the day progresses much like the others lately....Lou spends an awful lot of time in front of the tv now......never ever thought I'd see the day I would 'ALLOW' it.....yet here we are.......at least he watches the history channel quite a bit. My mom is still visiting and he has really enjoyed the time with her. That's a funny thing, too. Never thought I'd see the day he would ASK his mother in law to MOVE IN with us.....but he does now.....all the time....that's the good part of the brain tumor talking......the real Lou......the one that is still in there that shows itself periodically ........ quick.....catch it.......oops.....it's gone......."what day is it" is back....... Lou's "trainer" came today. We have gone from the treadmill and bike to now working on getting up and out of the chair.....sigh.....but it does help him in some way I think....at least it is a break from his usual routine.......Damon comes home from school with a new haircut....nice......Damon leaves to go out with a friend......"thumbs up Dad" on the way out the door..... Drew came by as he does just about every night. Thank you my son. I know Lou loves this. And they have a REAL conversation......wow.......did you hear that??? Amazing things. Good, this is good.........can't keep it going....but it was good. A bit later, it's time to turn in.......what started out as a bad day......ends as a good day. Lou says "thank you for taking such good care of me Cathy. I know it isn't easy, and I want you to know I appreciate everything you do for me"........I hug him and rub his back.....and say thank you, to him.......thank you dear Lou......just for being you.

An Update

This blog is not exactly serving the purpose that I know some people want and need. If you are checking here to see how Lou is doing....to see what Lou is doing...to see how we are doing...you're not really going to get that. So I'm afraid I am leaving alot of you in the dark because this has become my way of communicating with you....and this is NOT about how Lou is doing, it's NOT about what Lou is doing, and it's NOT about how we are doing...it's about observations and feelings, with some learnings thrown in. That said, periodically I will post an update, if nothing more than to give myself a break from trying to always have something meaningful to say! Nothing much has changed in the last month or so. Lou is no better or worse then he was a month ago it seems to me. A month ago he had an MRI that showed some progression, but not "rampant" as his doctor said. I don't see many changes that would indicate it IS rampant at this point, but what do I know? We have some good days, some not so good days, some wonderful moments, and some not so wonderful moments. All to be expected. The boys are doing quite well, all things considered, or at least I think they are. Drew will continue working at the Mayor's office for the summer, full time (yay!), and he is doing well at school. He has matured so much over the last year or so.....he's truly a man now, shouldering much responsibility and doing it well. Everytime I see him, my heart just swells. Damon is doing better, I think...I hope, I pray. I do not think he is having headaches as frequently as he was, though I think one started yesterday at dinner when the conversation turned to Damon's summer plans and it all had to be explained again for Lou...sigh.....but Damon has had some good news to keep him going ... he was named co-editor of the newspaper for next year (the AWARD WINNING high school newspaper that is!), he won a prestigious award for his poetry, and he is off to study at USC this summer.....all good things. Damon is a great comfort to me...steady and calm, still waters that run very deep. God really knew what He was doing in giving me sons.....THESE sons...... My mom is here for two weeks...it is great having her here but each day I am reminded of the passage of time....she is more forgetful and not as strong as the last time I saw her. It worries me. And, I am so sad that I cannot be there for her as I should be.....I have someone else to "be there" for.....talk about being "sandwiched"...yes, I am. I'm torn between the people I love the most....it truly pains me..... That's about it for us. Tomorrow I will try to think of something pithy to write.....one can't be pithy ALL the time , after all! It's now been 19 months since Lou's diagnosis.....tomorrow is another day, God willing.....

Stumbling blocks

Last night.....late.....watching tv.......with Lou......settling in......he says, out of the blue...."what is the biggest stumbling block you face to having true happiness"..........HUH??? ..... hmmmm.....well let's see....could it possibly be the fact that you have a BRAIN TUMOR???????????? I don't say that of course. I say.... "well....hmmmm....I'm not really sure......I mean, I"m pretty happy you know.........what about you.....what is the biggest stumbling block to your true happiness, Lou" ???? And he thinks.....and he says....."well, I've been thinking about that. And well, I don't have one, I'm really happy right now, you know? " Excuse me , I'm thinking.....WHAT did you say????? He goes on to say...."would you agree this is a pretty good time for us .....? " Uh huh....yep, I sure would I say...........great time for us, you sure are right about that. Couldn't be better. And he says..."there is no reason this cannot be the best time ever for us"........right, no reason at all, none.....uh huh........and then he says........."where are we?...... are we in our apartment?"...........there it is.....that darn stumbling block, staring me right in the face.......can't get away from it for long......it's ok......he's happy....he feels happy.....somehow, he feels happy....no stumbling block for Lou. Guess there's a lesson in there somewhere.......right? Happy Mother's Day!

Sweet Dreams

I will just end this day by saying I am sad...so very very sad......ah well...."tomorrow is another day".... I hope it's a better one........

Take what you can get

Over the course of the last several days, Lou has had a very lucid conversation with each of us, separately, lasting anywhere from twenty minutes to an hour. Amazing, give and take, non repetitive, on topic conversations.....the kind we used to get.....with our "old" Lou, the BEFORE brain tumor Lou.....THAT Lou...the Lou we so rarely see anymore. With Damon, he talked about the future....what he wants to study, where he wants to study, how can we help him, etc. Lou talked about his own experiences at that age with preparing for the future. With Drew, it was about law schools...and his future. With me, it was about our retirement.....(ok, maybe this wasn't a lucid moment but it sure sounded lucid). I was at the dinner table when he talked to Damon....if I closed my eyes, I heard Lou as he always was...he was right there with us.....but then.....it disappeared....vanished into thin air.....and we are left hanging....breathless.....aching for more....it's not to be. The boys wonder..."what IS this....did you hear Dad?".....and I say......yes...it was there....it's still there....deep inside......hang on to it....hold it close....remember it...we don't know when, or if, we will catch a glimpse of our Lou again. I find myself happy and sad when this happens. These moments taunt and tease...an emotional high inevitably brought back to earth with .."What day is it".....and on we go...to dishes and homework, and other mundane tasks..... We take what we can get......with Lou, a glimpse is so much more...a glimpse of Lou is better than an evening with someone else.......we'll take it.......

Party Time

Tonight I attended a fund raiser for the brain tumor center at Northwestern, where Lou is being treated (or should I say, WAS being treated). Lou's agency is becoming involved in this cause by working on a brochure, and we wanted to support the fund raiser...good cause of course! Several folks from the office came, Drew and his date, and myself. It was a great party. But it was the first time I've been to such a function without Lou. And we go to ALOT of these types of things. I felt like I was missing an appendage. I'm so used to being arm and arm with Lou at things like this. I felt so alone at times, so completely alone, in this large crowd of partying people. And I wanted to say to so many of them..."hey, my husband is sitting at home with a brain tumor. You guys are all so lucky to be here dancing away......do you KNOW that" ????? I didn't stay til the end. I was happy to come home to my buddy....my dear, sweet buddy, who said "thank you for making it a nice day" to me, as he went to bed......how can he say this?? How could it have possibly been a nice day for him??? It was NOT a nice day at all for him....he fell once, was sad, and slept half the day....but he FEELS it was a nice day....I'll take it. I'll take it over parties and dancing.....it's enough...for now, it is enough..... Goodnight, all.

It is what it is

As I was saying, I do wish I had started this blog sooner...it is getting harder for me to reflect on the lessons ... it's getting harder for me, in general. The intent of this was NOT to focus on the day to day here, that would be depressing...yet, I find I am doing that. The truth is..."it is what it is"....and it is.....sad. So very very sad. Days like yesterday make me wonder if I am strong enough to DO this, strong enough to HANDLE it. It was easier doing all the busy stuff that went with this before...the treatments, appointments, blood tests, hospital stays, phone calls, prescriptions, therapies...all that...was easier. The fight was easier truth be told. This.....this part... is hard. I have not been able to face the notion that "it is what it is"....I've been stuck in the mode of "it is NOT what it is..." sigh....perhaps it depends on what your definition of "is", is.....as an unnamed former president once said..... I stumbled upon this verse just the other day...."But whoever is joined with all the living has hope, for a living dog is better than a dead lion." (Ecclesiastes, 9:4.) Hmmmm... I have wondered, these last few days, if this is true...... Interesting I stumbled on this verse NOW...I suppose, when I needed it....when I was questioning..... and then, late last night, after a difficult evening, Lou says to me, "you make my heart smile, Cathy"....and then I know......the verse is true.....it is what it is. Hoping you are enjoying the spring....and the hope it can bring. Cathy

You can't always get what you want....

It's May already! Soon it will be 19 months since Lou's diagnosis...that was another lifetime ago...so much has happened and yet, so little too. I should have started this blog earlier. I am trying to now remember many things that seemed so poignant at the time. We're in a different place now ... treatment is over....we watch...and wait...and try to live a normal life, whatever that is. Lou's vision is very bad and will not improve and his walking is not good. He frequently mistakes what he sees for what he WANTS to see....especially apple pie....he FREQUENTLY thinks he sees apple pie...I actually get a little chuckle out of that one. Others are not so funny, like thinking his watch is his glasses. Huh? What I have figured out is that he says what is really on his mind...he is THINKING he has to put his glasses away while he is LOOKING at his watch. He is THINKING he would love some apple pie while he is LOOKING at the boring bananas. If he calls me Anna Nicole Smith while he's looking at me, then I know I'm in trouble. All kidding aside, we are in new territory here that is often hard to navigate. Ah, but that has been the way of this journey all along..changing waters that get deeper and murkier....and no map...not even a compass. Just faith...and hope.....and love.... lots of that....thank you, all, for your continued love and support...it keeps us afloat...

Mondays

It can certainly be hard to get started these days. The reason I have a hard time getting out of bed is the reverse of the reason why I have a hard time GOING to bed....when asleep, there is no brain tumor.....so I like to hang on to those moments...and to Lou...the Lou with the sleeping brain tumor...the Lou without questions..sometimes I think he will just wake up and be his old self and this will all have been a dream...but then he does wake up, and says .."what day is it...why am I not at the office"...and I know....nothing has changed...the day has begun...much as every day begins for Lou...with a question mark. I keep going...because HE keeps going...if Lou can get up and face the day, when every day is the same for him, when he does not know how many days have gone by...then I can face the day too. I don't know how he does it....but I'm awfully glad he does.......