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!