Everybody hurts...differently

As I've mentioned this is not the first time my family is going through a traumatic medical situation,  Back then I not only witnessed how my mom, brother, and I all dealt with my dad's accident in our own ways, but also how our friends and family members did as well.  I found that there are just some people who thrive during a crisis. They are the first people to show up at the hospital to sit by your side, or the ones who will buy you groceries and who will make you meals. These people aren't always your closest family or friends, but in the thick of things that doesn't matter to you or to them.  Then there are others who will disappoint you when you need them the most.  I've seen both ends of the spectrum first hand.  As a matter of fact, I've had nothing to do with my grandmother since 1997, you may guess where she fell on the spectrum.

So here we are again, family crisis #2.  Even though I know from my previous experiences that I should not put expectations on people to act in a particular way, I can't help it!  I've already been pleasantly surprised, annoyed, shocked and hurt by how the people around me are responding to my dad's diagnosis, to my dad himself, and to me.  I've found myself getting stressed about those who aren't acting like I thought they would.  Today, I'm trying to reel myself in and stop stressing, because I certainly have enough on my plate already. Somehow, I've got to learn to just lean on those who are offering, and not worry about those who aren't.  But that is easier said than done!

The calm before the storm

These weeks of relative quiet before my dad begins treatment are proving to be harder than I thought. He's doing better day by day and while we still have someone helping every morning, I'm only going up to see him once this week. With less to do, I've begun to worry about the details of the treatment.  When will he begin the chemo? How many days a week will he have to go, and for how long?  How will he feel? Will he be okay in his own apartment?  Uggh, the list goes on and on.

Right now the logistics of getting him to chemo are seemingly impossible.  I would expect that he won't be able to or have the desire to drive himself back and forth to the treatments.  This would mean Todd or I would have to leave Binghamton, drive the hour to Norwich, pick my dad up and drive another hour and a half to Syracuse, sit with my dad during the chemo, and then reverse the route.  It would be a full time job.  After a while I'd expect my dad to not feel so hot, and who wants to ride an hour and a half in a car when you're not feeling well?

So, we're contemplating moving my dad to Syracuse during his treatments, and possibly permanently.  Yet another task that is proving to be difficult.  My dad is on disability and currently lives in subsidized senior housing.  We love where he is, and ideally we would like him to be in a building that is similar to what he has now.

Yesterday I drove to Syracuse to scope out the neighborhoods of some of the subsidized housing I'd found online.  Yuck.  The neighborhoods we're sketchy and the buildings were nowhere near as nice as what he has now.  Kind of what I expected for a more urban area.  There are also two buildings near to where I grew up, and they are both nice, but one has a year waiting list and the other won't take anyone under 62.  He'll be 61 in March.

Luckily. my mom is on the case and late today she found a place that looks okay and may possibly have an opening in February.  The application is in the mail.

Moving my dad in the dead of winter to Syracuse should be so much fun!

Recovery: the day to day stuff

Its been a little rough since the surgery. Although physically the recovery is going well,  my dad's "hospital psychosis" turned into "apartment psychosis" after returning home, and the first few days we were really worried that he wouldn't be able to be on his own due to all his confusion.  His needs to use a walker to get around, has restriction on lifting and activity, as well as no driving for 6 weeks. Todd and I took turns driving to his place for the first few days to bring food and check in, and enlisted some other help. We thought as long as he had meals, tv, books, and people to check on him he'd be fine.   But, of course nothing is ever perfect.

His third day home he called me from his cell phone and said "Are you playing tricks on me?  Where is my car?"  I freaked and said "WHERE ARE YOU?"   He said " Standing by the front door of my building but I can't find my car"   Taking on my parent role, I said "Get back to your apartment, call me when you get back in!"  Long story short, he thought he was going to take a little trip to WalMart, but luckily had forgotten he'd moved his car out to a far back parking lot before the surgery. He seemed to know that he wasn't supposed to drive, but with his confusion, I don't know if he was trying to get away with something or if he just forgot his restrictions.  He went back to his apartment and hasn't tried to drive since then (he still doesn't know his car is out back of the building, and we plan to keep it that way until he can drive again!)

Then this past Friday my brother (who helps my dad with his finances) saw that there were 3 charges over 2 days for a store around the corner from my dad's apartment.  He called my dad and asked him if he somehow walked to the store, my dad said no. Then he asked him if he drove to the store, my dad said no. Finally after some beating around the bush, my dad admitted that he had given the complex manager his debit card to go buy him CIGARETTES!!!

I was infuriated when Todd told me this lovely tale.  Because my dad has been a long time smoker, he had a terrible time in the hospital with coughing after the surgery, it was very very painful.  They put him on the nicotine patch in the hospital and he told us he had no desire to smoke anymore, especially after all the coughing. So I was very disappointed to hear he was smoking again, for a million reasons, but mainly because he has CANCER!!  So I turned into the Mom again, called my dad and scolded him.  Then called the complex and left a message with the lovely manager to let her know that I didn't think it was professional or ethical of her to take a tenants debit card and buy him cigarettes.  Especially since he has CANCER!  Not sure if I'll get a return call.

The distance has made my role as my dad's helper a little tricky during recovery.  There have been lots of phone calls at weird hours of the day from my dad, daily phone calls to remind him to take his meds, and trips back & forth to Norwich to bring food, and to help clean.  This is going to be a long road, and I'm trying to figure out how to settle in.

P.S.  I'm finding yelling about cancer and typing cancer in all caps very therapeutic!

This ain't no TV show

You know how it goes on TV shows and movies where someone is diagnosed with cancer. The characters are usually sitting in the doctor's office with their loved one and the doctor says "I'm sorry to tell you this, but you have (fill in the blank) cancer, and six months to live".  Everyone immediately starts crying and hugging right there in the office.

Here we are almost a full month into my dad's cancer journey, and I've yet to sit in a doctor's office with him, and I have absolutely no clue how long he has to live.  The information we do have, has come to us in bits and pieces, from my dad himself, and through phone conversations with doctors.  We won't be having that sit down with the doctor for almost 3 more weeks, and the suspense is killing me.

I'm not angry that we don't know what to expect yet.  Its due to the unusual circumstances of my dad's brain injury and the fact that he is receiving medical care in Syracuse, over an hour away from me and and hour from where he lives as well. My dad hadn't been feeling well for a few weeks, and was told by his Nurse Practitioner to go to the VA ER if he felt really bad over the holidays. So he did, the day after Christmas. My first phone call was from a nurse in the ER telling me that my dad had driven there, and that they thought he had diverticulitis.  My dad was stable, but not up for talking, so I made plans to drive up the next day. By then they had decided to run more tests and by the 2nd night we knew there was a mass.  Two more days of testing while he was hospitalized and they were sure they had to operate. Since I'm an hour and a half away from the VA hospital, I was getting most of the info over the phone from my dad.  The times I was there didn't seem to coincide with a doctor being anywhere in the vicinity, so I was also speaking to the surgeon by phone.  By the time they let him go home for 4 days before the surgery, we knew he would be having a colon resection and it was most definitely cancer, but we had absolutely no idea of how bad it was.

Many people, especially the elderly, can develop what is called hospital psychosis during a hospital stay. This can involve hallucinations, and confusion while hospitalized.  My dad already has a traumatic brain injury, and on a normal day suffers with short term memory loss and confusion when he is extremely tired.  So being in the hospital is very hard on him and he definitely develops hospital psychosis. This has been a big problem when he tries to relay information to us from the doctors, we just don't know what is real and what he has made up as a result of his confusion.  We have told the doctors and nurses over and over that he has a TBI, but they have never seem fazed by it.  With all the privacy laws in medicine, it seems no matter what the patient's mental status, their personal medical info and results have to be told to them first, and then to family, and then only after their consent.  While the doctors have kept us pretty well informed by phone, my dad has often been the first to tell us about upcoming tests and results, and we have found he just isn't always accurate.

So he went home for 4 days before the surgery, (on a strict liquid diet, poor guy) and we asked him to clean up his apartment and clean out his fridge, because he would be in the hospital for a week or longer post surgery.

He had the surgery on Jan 4th, and that day DID seem like a tv show, lots of pacing in the waiting room, having the nurses call the OR to see if he was out yet, and finally the surgeon walking into the waiting room in his scrubs to deliver the news from the surgery.  This surgeon had seemed like a Debbie Downer type previous to the surgery, but when he came to us after the surgery he actually sounded positive.  He said the tumor had grown out of the colon and into the abdominal wall.  He said it didn't appear to have grown into any organs, and they had been very aggressive to remove it from the abdominal wall.  He thought that this was the kind of cancer that could be taken care of with just surgery, but we'd have to wait for the pathologist's report to be sure it wasn't in the lymph nodes.  We were able to go into the recovery room and see my dad.  He was pretty lucid for a guy who had undergone a 4-5 hour surgery and my brother and I drove back to Binghamton feeling kind of okay about everything.

As we know now everything is not okay.  But the bad news has still been just trickling in.  Even when I spoke by phone with the oncologist, she was kind of vague.  All I got from that conversation was that it is Stage IV and in four lymph nodes, and he'll need chemo.  Not enough details for me, the detail queen.  So on February 9th, we sit down with this lady doctor, and I'm wondering if that is when we're going to have our "made for TV" cancer moment.

A little history

Why does my dad's cancer seem to be so much about me?  Cause I'm a whiner? Kinda.  But mainly because it is going to fall on my brother and I to be the caregivers for my dad, since our parents are divorced.   My parents are divorced pretty much as a result of what happened on March 16th, 1997.

This part of the story is going to seem like its all about me too, but since this is my perspective of how it happened I guess I really can't help it!  I was studying for midterms at my apartment in Binghamton on the afternoon of Sunday March 16th, 1997 when my mom called.  She said "Hilary its Mom"  I thought that was weird cause she never actually has to say "It's Mom", I mean, I know her voice.  After that what she says is a blur but basically it was that my dad was in a car accident and was at University Hospital in Syracuse and I should come right away.  I felt like it was a scene from some bad movie, and I remember yelling "is he dead, is he dead? Cause I need to know!"  She said no but it wasn't good, and that my uncle could come get me.  I said I'd drive myself because I couldn't wait the hour and half for him to get me. This was before cell phones and both my roommates had gone home for the weekend, so I had no way to tell them.  I left them a strange note, and got in my car.  Don't remember the drive or much else from that day.  They gave us a private family room off the ER (not a good sign) and soon we were in the ICU waiting room.  My dad had suffered a severe brain injury, and a shattered hip.  He was in a coma and not breathing on his own.

There are so many details to this story that I could make a whole blog about it, and I'm trying to figure out the best way to share it without it being a book.  He was in a coma for 3 weeks, and in the hospital for 5 months. His recovery was slow, as he began to emerge from the deep sleep of the coma, he was kind of like a kid.  He was often confused about where he was and what was going on, and suffered from short term memory loss and some personality changes.  He also had to endure physical therapy for his hip and nerve damage to his foot.  Finally in August, he came home, he a different person both physically and mentally than pre-accident,  and my mother was now more caregiver than wife.  I was removed from much of went on in the home because I was completing my senior year of college, and its not my job to air my parents dirty laundry, but lets just say things did not go well.  By 1999 their marriage was over, and thus began my new relationship with my dad.

He has been able to live on his own and start a new career, as a home health aide.  There have been issues along the way, various moves, complications during hip replacement surgery, and financial problems.  It has been up to me (and mainly me until my brother moved back up north 2 years ago from North Carolina) to deal with all this stuff, and I've had to take on a kind of parental role with my dad.  I've always been sad for the loss of my "old" dad but grateful that we are closer now than we ever were before the accident.

I've been prepared to continue to take care of my dad as he is, for however long I needed to, but I never ever saw this cancer coming.  I don't feel like being the parent anymore, in fact I feel like laying on the floor kicking and screaming, crying "no, no, I can't do this"  like a five year old.  I imagine I might actually do this at some point very soon.

My irrational fear

Getting cancer is something I worry about at least once a week.  Seriously.  In my mind, every ache, pain, and twitch in my body could be the start of some kind of cancer, which I will then suffer horribly with, and then die young so my children grow up without a mother. This is how my mind works.  This fear of cancer did not come because I have had a lot of experience with cancer nor because I  have a family history (other than my grandfather and a couple of great uncles on my dad's side).  This fear started when I had kids.  I worry that I'll die when they are young and I have convinced myself it will be from some kind of cancer.  Yes I know this makes me sound kind of crazy.

I have watched every after school and Lifetime movie where the young kid, or mother, or girlfriend, has some kind of cancer, they suffer through horrible treatments, lose their hair, start wearing a bandana on their head, fall in love with someone awesome, and then die in the end anyway.  I've read tons of  books and watched episodes of Dateline about people suffering with cancer.  I'm drawn to watch and read this stuff out of morbid curiosity.

I've been so worried about me getting cancer, it never occurred to me that anyone I know would get cancer.  I just never thought about it.  And in particular not my dad.  My dad has been through so much crap in the past 15 years that I figured he had already had his fair share of medical issues and that he would live to be 90 or at least 85.

And then BAM there it is, he has cancer.  This changes how the rest of his life will be.  And my life, and my children's lives.  As for me, this is too scary of a reality, too much of my fear is smacking me in the face.  It just seems like this should be someone else's life....not mine.

Here goes....

When I joined Facebook I realized I kind of liked posting status updates, and eventually began posting more and more.  The problem is I kind of have the urge to share more than most people want to know. BUT, I usually hold back on saying too much or on posting more than once a day because I don't want to become one of "those people". You know, the annoying ones that you are tempted to hide or unfriend because their status updates are too frequent, too stupid, or TMI?  I could have easily become one of those people except I care too much about what other people think.   I always have my "audience" in mind when I post, therefore I hold back or don't post at all because I'm afraid people will think I'm annoying too!

So, I've been toying the idea of a blog for a long time, to give me a place to say all the things I've been thinking, but didn't know what my topic of choice would be.   I fancy myself as kind of comedian, so I thought I could maybe blog about my take on life or being a mom or whatever and maybe it would be funny too.  Well, I never got around to that one, or any blog for that matter.  And then 2 weeks ago I was given a topic.

Cancer.  

My dad has Stage 4 Colon Cancer at age 60. 

 It totally sucks, and now I have something totally sucky to write about.