Sorry it has been so long!

I can't believe that I became such a blog slacker.  An update is definitely overdue!

My dad went without his medication for a couple of weeks, due to the drug shortage, and then when the drug was available he had to take another week off due to elevated Calcium levels.  He finally got back on track and is almost to the end of this 6 weeks of chemo.  He has a CT Scan in mid November to see how things are going.

The only thing that has me worried is some pain that has returned to the area near the surgical site.  Which naturally has me thinking that the cancer has started to grow back.  The doctor has just prescribed pain meds for now and we will wait to see what the scan will show in November.

I'm thankful that my dad has had a mostly pain free and symptom free 11 months which is pretty amazing for stage IV cancer.  He's been visiting us about once a week and is doing all his normal activities, which right now includes getting ready for deer hunting season.  I'm happy for him.

Chemo drug shortage? What?!

Last week someone mentioned to me in passing that there was a chemotherapy drug shortage and that they hoped that it wouldn't affect my dad.  I listened to this information but didn't really process it and couldn't remember hearing anything about it myself online or on the news.  Well guess what?  It is a real serious problem, and my dad finds himself on the front lines.

The details are still fuzzy and I hope to get more details from his doctor on Monday. Yesterday, at my dad's chemo session, the pharmacist paid him a visit to let him know that they did not have any more of one of the drugs that he gets weekly.  The pharmacist showed my dad a letter from the VA to the pharmacy about the shortage, and there was actually a line in it that said "we do not know the reason for the shortage".  Great, he can't get the medicine he needs, but they don't know why.  I feel like I want to go on and on about the drug companies but I don't really have the facts to back myself up, so I'll save my rant until then.

So my dad was unable to complete this cycle of treatment, and in fact has the next 18 days off.  This is to clear the medicine out of his system so he can begin a different course of treatment.  On the 30th he will meet with the doctor and will then begin taking the chemo in pill form.  I don't know how I feel about this because we just got the information last month that the treatment he was on was really working, and it stinks to have to change to something new that we know nothing about!  I'm trying not to stress until I get more information but that isn't in my nature!

Its been a while!

Well my dad made it 8 treatments without many side effects.  On the 9th, he started to feel nauseous and it has lasted ever since (He had his 10th treatment on Wednesday).  I feel bad for him because the medication does not seem to be helping.  It is by no means debilitating but it makes me nervous because he hadn't been eating much before the nausea set in.  He has lost over 35 pounds since he started treatment, and even though he is by no means skinny, no one wants him to lose any more weight.

On the bright side, these side effects have come on slowly and haven't been too severe. Knowing that the treatment is working, makes everything a little easier to deal with, or so my dad tells me!

On the super bright side, TJ is taking my dad to NYC for a Yankees game on Wednesday.  The doctors agreed to push his treatment to Friday so he can go! My dad is a big fan, and hasn't been to the new stadium yet. I think its very sweet of him to take my dad, knowing the challenge of taking someone who doesn't feel well and who also has a physical disability.  Bonus points for TJ!

Finally some good news!

CT Scan shows that the little bit of tumor that the surgeon couldn't remove is gone!  The chemo is doing its job!  But because this is stage 4 cancer and in the lymph nodes, this news doesn't change the course of action for my dad.  He left the very positive appointment with the doctor and headed right upstairs to the infusion room to start the next cycle of chemo.  I went with him to the infusion room, the first time I've been in that room since the original "tour" we got during his initial diagnosis. It was a lot less scary there (at least for me) since he's been through one round of chemo and the side effects haven't been so bad.  After his treatment I drove him home, then went back to mine, it was a long day, but it was a good day!

Phew....Round One is over!

Last week, chemo treatment number 6 went off without a hitch.  They told my dad that he would be super tired after this last treatement of the cycle and so far that has played out to be true.  He has been sleeping 10 or so hours a night and then having 2 or 3 long naps during the day.  I usually talk to him on the phone 3 times a day and he keeps me updated on how much he has slept.  One thing that has been a problem is his lack of appetite.  He has not been nauseated, just not hungry.  He also has been sleeping through meals.  After talking to him on Monday about how little he has been eating, I decided the kids and I would meet him in Greene for lunch.  He ate a huge meal, plus part of mine.  I know he will eat when a meal is placed in front of him, he just isn't real good at making himself meals.

He had a dose of Avastin yesterday, which has actually been in the news lately. Read this article if you are interested in learning about Avastin and breast cancer.  The news doesn't seem to affect colon cancer patients yet. Anyway it was a short infusion, and then he had a CT scan of his lungs and abdomen and we will hear about the results of the scan on July 13th.  He has a chemo free week next week which he is really looking forward to.  I am very anxious about the appointment with the oncologist on the 13th.   I'm hoping the chemo is doing what it is supposed to and the doctor is happy with his progress.

I think everything is going much better than I had anticipated and some of my fears were unfounded.  I know there is a long road ahead for my dad, but I feel calmer, and better equipped to handle whatever comes our way in the future.  I know my dad does too.

Chemo treatment #5 today.  I expect my dad to sleep much of the day away tomorrow and Friday.  He has been having a rough time emotionally, I think he is finally beginning to process the idea of stage IV cancer.  He called in tears on Sunday but wasn't really able to articulate why he was upset.  Luckily Thomas loves talking to him on the phone. I put the call on speaker and gave the phone to Thomas. He dragged the phone all over the house while he jabbered to Grandpa.  When I got the phone back, my dad felt better, a little 2 year old humor can really lighten the mood.

Today he called me from the chair while he was getting the chemo, and I could tell he was sad. One of the nurses had shown him the schedule for the chemo for the rest of the year and he found out that he is on it until the end of the year, because his cancer is "progressive".  We had been told pretty clearly at the beginning that he would have to be on chemo on and off (mostly on) basically forever.  That is what happens when you have such an advanced stage of cancer, and is the only way to give him more time on this earth.  While my brother and I understood that from the getgo, I realized today that he really didn't.  I did my usual, "look on the bright side" speech.  "You are feeling better than you thought you would, and are able to go about your normal activities, and drive, and see your grandchildren" etc etc.  I could tell that this time the speech didn't really help much.  

Another week and then he has two weeks off, so I'm hoping he continues to feel ok so he can enjoy that time.
We will be with him this weekend,  this Father's day is going to be more meaningful than ever.

Another update

I'm glad things around here are so uneventful that I forgot to update the blog!   Chemo treatment #3 went well.  My dad did take a couple of doses of his anti-nausea medicine the first day after the treatment, but that was about it.  He says he is very tired, and has been sleeping more.  One thing my brother and I have been saying is that in a way, my dad's lifestyle even before he got sick is actually pretty conducive to recovery.  He was already physically disabled, and didn't have a 9-5 job.  He volunteered at a clothing store affiliated with the local hospital, but that was only a few hours a week.  So now if he is tired from the chemo he can just sleep.  The side effects aren't derailing his life as much as they might for someone who is younger and working.

I do expect the last three treatments of this cycle to be harder on him than the previous three.  I guess we will find out soon enough!

Chemo update

Today was my dad's second chemo treatment.  Thankfully last week was very uneventful.  He was at the hospital for about 8 hours and he was very tired that day, but he had no side effects at all.  Today was a much shorter day for him, and the nurses assured him that he probably won't notice many side effects this week either.
So phew...for now.  Thanks everyone for your kind words, it means alot.

First Day Jitters

Tomorrow my dad starts chemotherapy.

This is the part where I get really scared.  I can't even imagine how my dad must feel. I will not be going with him tomorrow, in fact he is going up alone.  My brother will pick him up and drive him home, but the nurse has explained to us that it is an all day process and he does not necessarily need someone by his side for the entire eight hours. I feel guilty for not being there, but in all honesty I don't know if I could handle it.  Normally, I am the "strong" one, I have never let my dad see me upset since the diagnosis.  I always try to reassure and explain things to him when he seems sad or unsure.  But Chemo scares the crap out of me and I don't know if I can handle this part.  I feel like I will fall apart seeing him hooked up to the bag of poison.  I feel like I will fall apart seeing him sick and hurting from the side effects.  I'm probably going to fall apart soon anyway but I'd  rather it not be in front of the guy who is already struggling to be brave.

I'm waiting for someone to swoop in and just take over from here on out so I can be the kid again.  Anybody?

And so it begins

Well there's nothing like a couple of sick kids at home to help distract me from the looming start of my dad's treatment.

On Tuesday my dad and brother went to Syracuse for oncology and pulmonology appointments, and to finally find out what the course of treatment will be.  He also has a new oncologist because the other one took a mysterious leave.  My brother seemed to like this guy better anyway as he was a little more straight forward and to the point.

Bottom line, they have to treat both cancers.  My dad looks and feels great, and based on that they've decided to do the radiation first.  He will get a 5 day course of radiation at Upstate Hospital, and they already called to set the appointment for this coming Monday.  The oncologist feels its better to do this first because there is no telling how he will feel with the chemo. He may become too weak to do the radiation at a later date.

Within three weeks from Monday he will begin chemo 1x a week for 6 weeks.

Those are the facts and now for the mushy part.

My dad was here for Easter and brought all three grandchildren baskets.  He really does a great job of picking out what they like, they are always so pleased with his gifts.  While I watched him drive away I got teary because since his illness I've come to realize that out of all of my children's grandparents, he has the most natural way with them.  They always run to him and hug him when he arrives.  They climb all over him when he sits at my kitchen table.  And it is all effortless.  He doesn't try too hard to get their attention, he just loves them and they know it.  I get angry sometimes because I see how close they are to him and I know they will most likely only have a short time with him.  I don't want them to have to go through the pain of losing someone they love so dearly.  On Sunday as he was about to leave he turned to Thomas and said "Grandpa's got to go home now"  Thomas said in his cute 2 year old voice "Don't go Grandpa, stay here with me"  

Thats the stuff that really really gets to me.

Two options and they both stink!

We finally got a phone call yesterday that outlines a plan for my dad and his treatment.  There have been a bunch of factors holding everything up, the main one being the spot on his lung. From the biopsy, we found that the spot on the lung is lung cancer and not colon cancer that has spread to the lung.  This means that it will have to be treated with radiation.

The plan has been outlined to me like this:

He will have a scan of the lung on Tuesday morning.  If the spot on the lung has grown since the last scan they will immediately do 5 days of SBRT, a type of radiation.  Then, when the radiation is complete they will start the chemotherapy for the colon cancer.

OR

If the scan shows that the lung spot has NOT grown, they will immediately begin chemo, and do the radiation during a break from the chemo.  The chemo will be 1x a week for 6 weeks and then 2 weeks off.

This is where the scary stuff begins.  Yes we've been impatient for him to begin treatment, but he has been feeling really good, and the idea that the treatments are going to make him feel bad, is kind of annoying.  But then again, we don't know how long he would continue to feel good with two different kinds of cancer in his body.  Its kind of a lose/lose situation any way you look at it.

This whole thing has become such a normal part of my every day life.  I find myself having perfectly calm conversations where I say things like " I hope the spot on his lung is lung cancer and not colon cancer"  When did it become normal for me to hope for one kind of cancer over another? I know when I started this blog I certainly did not think I would make this adjustment.  But I guess you really have to if you expect to make it out of something like this with your sanity intact.

The Neverending Diagnosis

This whole thing is really dragging on and on. The biopsy on my dad's lung will finally be this coming Monday. My brother spoke to the oncologist yesterday and she made it seem like she is already pretty sure its regular lung cancer, not colon cancer that has spread to the lung. The biopsy is just a way to confirm her theory.

This is not a doctor who can speak in layman's terms, so sometimes you come away from phone conversations slightly confused.  The gist my brother got was that they would do the radiation on that spot first before the chemo starts. She did not say how long he would have to endure the radiation.

My dad doesn't say much, but the wait has got to be taking a toll on him mentally.  We were away for a week so I haven't seen him in a while, but he has put back all the weight he lost and seems to be feeling great.  At least we have that to be thankful for.  Its kind of crazy for a hypochondriac like me to think that someone with Stage IV colon cancer AND lung cancer can be walking around feeling just fine.  Makes me think that scary things could be going on in my body and I could have no idea!

Yep I knew it.

The phone call came Thursday afternoon. The spot on my dad's lung "lit up" on the PET scan, indicating cancer. I absolutely thought it was cancer all along and expected the phone call to go the way it did. The doctor did not shock me.

He will have a biopsy in the next 2 weeks to determine if the spot is actual lung cancer, or colon cancer that has spread to the lung.  This will determine how they treat that spot.  If it is lung cancer they will go after it with radiation when my dad is on breaks from the chemo.  If it is colon cancer, they will hope the chemo will shrink it, since the drugs he'll get are targeted to attack that kind of cancer cell.  

Chemotherapy should start in the next two weeks as well.  As soon as the doctors know the plan for the lung, they will get started on dealing with the colon cancer.

As for how my dad is dealing with the news. Its hard to tell.  The doctor called him right before she called me.  He was very concerned about making it downstairs to the ham and cabbage dinner being served in his building's community room so we didn't chat for long.  If you know my dad, you know that food taking priority over everything else is a pretty normal thing. If ignoring what he just heard and heading off to eat a good meal is what he wants to do, I'm not going to judge.  The guy with the cancer gets to do whatever he wants.

Quick Update

My dad had his PET/CT on Friday afternoon in Buffalo, and we were told we will have the results by Tuesday.  We will know then if the cancer has spread to his lungs.  I really don't feel like dealing with the reality of this.  I wish I could have a time out!

Cue the Jeopardy theme music

Still waiting....and waiting for the phone call to schedule my dad's PET/CT.  He had a follow up appointment with the surgeon last Wednesday.  He drove himself, which worked out well since I spent the morning at the doctor's with Emma who had a double ear infection.  While there, he spoke to the oncology nurse and she said they would let him know when they heard from Buffalo about the scan.  We still haven't heard.

On the home front, I decided it was time for me to address the big "C" word with Emma.  I went to Barnes and Noble and bought the only book they had for talking to kids when a  family member has cancer.  I took her up my room to get away from household distractions, and I read it to her (skipping some parts and summarizing others).  She listened and nodded, and when I asked her if she had any questions she said "can I go downstairs now?"   I didn't know what to make of it, I don't know if it all went over her head, or if she's exactly like her dad when it comes to unpleasant discussions (his method is avoid them at all costs).   I know she's only five and I can't expect her to react like an adult, so I've let her be.  I only asked her one time since if she wanted to talk about Grandpa, and she said no.

Even though the wait is frustrating, especially for my dad, I'm still enjoying this "whole lot of nothing" that is happening right now.  

Uncomfortably numb

I spent a good 12 hours stressing about the weather and whether or not to drive in the snow to my dad's appointment on Friday. He was getting a ride from a VFW van that takes vets to the VA for free, so I knew he would get there, I just didn't want him to have to navigate the hospital and have his chest port procedure alone. In the end, I decided not to risk the drive. Luckily my uncle works overnight at Fedex in Syracuse so he showed up at the hospital in time to see my dad after the procedure. Then he drove my dad home so he didn't have to wait to take the van back.  Phew.  

I spoke to my dad on the phone while he was on the way home, he said that the doctor had spoken with him briefly in the hall and told him he'd have to wait for the port incision to heal before they would start chemo.  I felt much less guilt about not going, and was glad he was on his way home safely.

Cut to an hour later.  Oncologist calls me, I think its going to be a recap of what my dad just told me.  Wrong.

She calls to say "by the way" we found a post-op CT Scan report that we hadn't seen before and there is a spot on his lung. She is not sure what it is.  They compared it to a scan he had in 2007 and it wasn't there then, which makes it a little more worrysome.  So he has to go to Buffalo for a PET CT this week.  If it is cancerous the pulmonologists will let the doctor know the next step.   If it is lung cancer, they will still treat the colon cancer the same way as originally planned but he will no longer qualify for the colon cancer clinical trial.

Why am I not falling apart from this news?  I feel nothing.  Am I in denial? Am a I such a pessimist that I already had given him a death sentence?  No idea.  I'm just numb.

Nothing is happening....and thats a good thing!

This has been a real quiet two weeks, and I've been able to kind of forget and ignore what is going on with my dad.  He has been feeling fine, and he's able to drive.  So I've backed off and let him do his normal day to day stuff. I'm in contact with him 4 or 5 times a day but we haven't seen each other in a week.  On Friday he has an appointment to get his chest port put in and another appointment with the oncologist, where I'm hoping we'll learn more about the treatment and when it will start.

I know that I've been living in la la land and that bad stuff is still to come, but until Friday I think I'll stay in my fantasy world, its a lot nicer here.  

More like "Huh?" day than D-day

So Wednesday was pretty far from an actual D-Day. It was a 13 hour day of driving and various appointments.  I guess the doctors just wanted a good look at my dad so they could assess his surgical recovery themselves, but when I walked out of the hospital at the end of the day, I felt just as confused as when I walked in.

Now it is two days later and I've begun to sort through everything that we were told.  We DO know more about what will happen, it just wasn't laid out in the organized detailed way I had hoped.  I was SO right about this not being like what you see on TV and the movies!

The doctor and her nurse are sweet as pie, and you can tell they have real empathy for their patients and their families.  They would not give specifics about how much time he has, with or without therapy.  What I came away from the appointment was that he does not have curable cancer, but they think they can give him time by keeping it at bay with chemotherapy.  The doctor was clear that she did not want my dad to lose his quality of life, so she does not want him to have debilitating treatments.  The nurse gave us printouts of the drugs that they will use in various combinations during chemo, and we visited the infusion room where he will receive the chemo.  The nurses there assured us that he will be able to come for treatments on the volunteer run medical vans that are available to all veterans.  That took a load off my shoulders to know I won't always have to worry about how he will get there.

The best part of everything is that my dad felt like a weight had been lifted off his shoulders too.  He never really told me what he expected the doctor to say but I think he really thought she was giving him a death sentence.  When we left he said that he loved the oncologist and told us "she's worth every penny they pay her!"  He can drive again, at least until the chemo starts, and he had his stitches out.  He seems so much happier, and I hope he enjoys the next two quiet weeks the best he can.

As for me, I expect that the worrying will continue.  I just haven't been able to find that shut off switch.

D-Day

Tomorrow is the big day.  We meet with the oncologist.  Being the worrier and pessimist that I am, I've pretty much played out every horrible scenario in my mind. I've pictured crippling chemo treatments, with nasty side effects, hundreds of long trips back and forth to Syracuse and I worry that they'll find it has spread to other organs.  Its not easy to be inside my head because there isn't much optimism there, and I'm finding the worrying to be exhausting.

Its also exhausting to NOT be a pessimist in front of my dad.  I've had two phone calls in three days from him that had me in tears after I hung up.  On Saturday, after discussing my plans to come and take him to the grocery store, he said, "I hate that I'm screwing everything up."  I was a little confused because I didn't think the grocery store trip was screwing anything up.  So I asked him what he meant, and he said "Because I'm going to die".   Not sure what I said as I stumbled through the rest of that conversation, but I was sure glad TJ was standing next to me when I hung up because I lost it.

Then yesterday he called me and said, "Before I forget, sometime between now and Monday I need to get a bouquet of flowers"  (he still can't drive)  "Ok, why?" I ask.  He says "Every year I buy flowers and leave them in the community room (of his building) and write 'To all the ladies of Golden Age, from all the Gentlemen'.  Now by no means is my dad some kind of saint, and he's certainly not perfect, but he does love to give gifts to anyone and everyone.  It just seems sweeter these days.  The guy has a lot more to worry about than Valentine flowers.  I told him that we would get the flowers and then hung up. Later, trying to tell my sister in law about the flowers, sent me in to momentary bucket of tears.

It will be a super long day tomorrow, we're leaving here by 6:30 am.  I really don't know what to expect, but knowing me, I'll certainly worry about it until then.

Its the little things that get to you

This afternoon I was cleaning off my counter.  I saw a piece of  scrap paper that said the words "Feb 9th" "Chemo", "Transport" and some names of contact people at the hospital.   I was going to file it among the growing stack of papers associated with my dad and his treatment.  I turned the paper over to see if anything was written on the back and I saw it had all the details of my daughters upcoming birthday party on it.

Pretty good metaphor for my life right now, my two very different realities are going to have to exist side by side every day.

I don't know whether to cry or to be happy that, so far, the juggling is going well.

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.