New Year

Well over a year has passed and I am pleasantly surprised at how well things are going with my dad.  I know last year at this time I was very frightened and confused by his diagnosis.

Here is the latest: He had a full body scan in November and the area around the surgical site, where there were still traces of the cancer, had continued to shrink. Last week he met with the doctors at Upstate, and we learned the radiation he had over the summer worked effectively and got rid of the cancer in his lung.  Really this is all amazing news.  He is on 6 week courses of chemo followed by 2 weeks off, and this will continue indefinitely.  Luckily, his only real side effect is fatigue, which he manages with lots and lots of naps.

He is actually going to start working again next week, as volunteer at a charity thrift shop where he had worked previous to his diagnosis.

I'm keeping my fingers crossed that our good fortune continues!

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.