thelanfords.com // life & loss & everything else

I have made so many checklists this week; and I am making real progress at checking things off.
Seems kind of strange to call it “progress” when dealing with a situation as this, but we are moving forward.

I moved two of Chad’s upcoming doctor’s appointments from August to last week.
They both happened to fall on Friday, which was a hassle, but also nice to have out of the way all at once.

First was oncology.
They hadn’t yet received the MRI report from Dr. T, so they were equally shocked to hear the news.
We briefly discussed Chad’s decision to forgo treatment. And then we started another discussion – about hospice.

We completed the appointment, armed with our PA’s home and cell phone numbers.
We just adore her, and I think the feeling is pretty mutual. We have been with her from the very beginning, and she was always genuinely happy to see us.
The PA & I hugged and fought back tears as she told me to be strong, have faith, and find a bright spot in every day.
I told her I knew no other way.

We had some time to kill before our next appointment, so we headed to the mall to check something off my list.
We made our way into the first jewelry store we found and looked around.
We were guided to a certain counter, and we found just what we were looking for.
We left with two rings; each one to represent the month is which our daughters were born.
Gifts for our daughters’ 16th birthdays.

We grabbed some lunch.
Didn’t talk a whole lot.
Chad was getting tired, and I hoped the next appointment would go quickly.

Second appointment.
Neurology.
We met a new PA, and I think not having a history with her might have made it easier to give her the change of Chad’s status.
We all discussed our plans for the Summer and what our goals were.
And the conversation was lead back around to hospice…I sense a trend…
—

In the past, I didn’t really understand the role of hospice.
Until 2007, I never really knew anyone who was terminally ill or needed any kind of medical care other than an occasional blood draw.

Since dealing with hospice during my grandmother’s cancer fight, I knew a little more of what to expect. But I still had questions about hospice; specifically what it means when you call them in. Chad & I both felt a little uneasy about calling hospice at this point; he just doesn’t look, act or feel the way I would think someone needing hospice would look, act or feel. I had in my mind that he would need to be extremely frail and unable to care for himself any longer.

But that’s not true.

While we don’t feel we technically “need” hospice right now, we are going to move forward with them.
The hospice nurses will need a baseline to gauge Chad’s condition in the future. They need to get to know our family and our routine. They need to get to know us. And we need to get to know them.
They won’t be coming in our home all the time, right now. In time, it will come to that, and I am grateful to have the resources to help take care of Chad when I need it most.
And they provide resources for the girls; therapy and grief counseling. That, alone, is a huge burden lifted.

All of this is based off a conversation with the oncology social worker, and we’ve yet to actually talk to a hospice representative due to the holiday weekend. We’re not in a hurry, but we’re glad to handle this up front. We’re more at ease knowing that the difficult part of our journey will be met with a few more helping hands.

—

So, I guess we’re moving forward. No other direction to go, after all.

This week, we’ll be spending time with some friends from out-of-state and Chad’s former co-workers.

Next week, our adventures begin!
I booked our trip to the Great Wolf Lodge, which will be followed by a day trip to the Lazy 5 Ranch.
Our beach and mountain trips may not happen as planned, but we’re still figuring things out.
We’ll be going to Tennessee to visit Chad’s sister and her family.

I plan to be at home for most of August, as Carys will need to get back on schedule before school starts.
Our friends gathering is in the works; and will be on a Saturday in August.

More details when they’re available.

I realized I dropped a shocker Tuesday.
I am still in shock at times myself, and I have had nearly 3 years to prepare myself for the news we received.

So to answer the first question many people have; No, it doesn’t make it easier to hear when you’ve had time to “prepare.”
I don’t think it’s easier to handle or cope with; you’re just not as blindsided I suppose.
We knew it was coming. Eventually.
I just didn’t think that day would be Tuesday.

I’ve received so many emails, phone calls, texts — thank you so much for your outpouring of love and concern for our family.
We are so lucky to have each of you in our lives.

There are so many questions lingering out there. And I do have some answers. Maybe not all; but some.
I’m sure I’ll end up doing a few of these Q&A posts in the future as the goal of our family blog is to preserve our memories through this journey — but to also offer help to any other families that may be in a similar situation.
So, yes I will publicly answer questions. I do not mind. It makes me feel like I am doing something other than twiddling my thumbs.

How much time does Chad actually have?
We do have an anticipated timeline, but we are not sharing that publicly.
Guessing the length of time a person has left is just that — an educated guess. It’s not exact.
We don’t feel that the quantity of time is necessarily important; but we do realize that we just need to do things a bit more quickly than we had planned. Which doesn’t seem to be a bad general rule. If you want to do something, why wait?
If it turns out we have “extra” time…well, hey, that’s a gift I will willingly accept.

But I just saw Chad. He doesn’t look sick. Maybe the doctors are wrong?
Maybe they are.
But I can tell you that I’ve been researching the stages of brain cancer for a few years.
And I can physically see the gradual progression of symptoms.
I saw the scan. Which, by the way, Chad wants to share with you soon.
We specifically asked Dr. T about the symptoms we’ll face and his best educated guess (again, this is not an exact science) is that Chad’s symptoms will not get a whole lot worse.
He will start having more difficulty moving around. And then will get more & more tired. He may or may not start saying strange things out of the blue.
His headache shouldn’t get any worse and he shouldn’t develop any kind of generalized pain.

What do you need? How can I help?
I’m sure I will need lots of things. But as of this moment, I don’t know what those are, really.
I am planning several short trips for our family for this Summer. If you would like to help me with that, please email me.
I will need assistance with meals and other various things later, but that’s not right now.
I will, in time, start a list of things I might need to free up my time and allow me to focus solely on Chad & the girls.
I find it difficult to accept & ask for help, but I am trying very hard to let go of that so I can enjoy our family time.

What about a second opinion? You should get one of those.
When Chad made this decision, he did it with all available information.
Since this journey began, we have sought the opinion of  three of the best neurosurgeons on the East Coast.
We have a wonderful and competent medical team.
And we are at peace with our decision.
We do not want any further tests.
We do not want to torture ourselves by constantly waiting for test results.
We do not want to dictate Chad’s medical history to any more medical professionals.
We do not want to be guinea pigs in a “try this and see if it works” approach, because that’s all that is left.
We do not want to talk to our daughters from a hospital room telephone any more, fighting back tears because they are crying and repeating “we miss you, when are you coming home, did the doctor fix daddy’s head yet?”.
We want to tuck them into bed each night and kiss their sweaty little heads, read bedtime stories and snuggle. And answer their tough questions head-on.

No matter our decision, we would second guess ourselves…just as we’ve been doing for nearly three years.
There comes a time when quality wins out over quantity and this is that time.

What are you doing to preserve Chad’s memory to the girls?
We have a lot of plans and I have a list a mile long. I’m constantly checking things off that list, and it’s only been a few days.
Our girls will always know exactly who Chad is. It’s my mission.

What are your plans for the Summer?
We are going, seeing & doing.
This is the Ultimate Summer.
And the girls have no idea what is coming! They are going to think we won the lottery or something.
Their little faces are going to be frozen into smiles for a good, long time. And I am perfectly okay with that!

—

Thanks for the support. Really.
It means more than you will know.
Keep an eye out for the friends gathering, and other various things to be posted.

Have a happy, safe & memorable 4th of July weekend!

As I type this, you are unable to see my broken heart.
You are unable to see the cloud of uncertainty and dread around me.
You are unable to see the waves of nausea I’ve been fighting since noon on Tuesday.
You are unable to see the peace I feel, despite it all.

Yesterday, in Winston-Salem, we received some answers about Chad’s ongoing battle with brain cancer.
They just weren’t the answers we were hoping for.

—

We had some time to kill before meeting with Dr. T.
Boredom and curiosity got the best of me.
I inserted the most recent MRI disk into my laptop.
I had to see.

After scanning through images, I found what I was looking for.
And I had to step outside.
There was an overwhelming sense of nausea that took over me. I couldn’t shake it for hours.

—

We saw Dr. T around noon.
He is always so pleasant, even when delivering unpleasant news.

Between March & now, Chad has developed several new brain tumors.
All of the new symptoms are clues to the health of his brain tissue; and it’s not good.
The new tumor growth is aggressive.

Dr. T rattled off a list of options, all starting with surgery slated for first thing Wednesday morning.
And then he mentioned that Chad would have to go back on chemo (Temodar); low dose — with no end date. That means he would be on chemo indefinitely.

I already knew Chad’s answer.
But I pushed him for surgery anyway.
A biopsy (to check the grade of the new tumors).
A new shunt (there is a ventricular area in the back of his head that is not draining due to the new tumor growth).
A revision to his right shunt tube (into his heart instead of his lung).
And a shunt patch to fix the leaky tube within his left chest wall.

I pushed.
And hard.

But Chad declined.
Just as I knew he would.

He is foregoing all treatment.

Chad does not have a significant amount of time.
Chad, physically, looks fine. It’s the things we cannot see. And that’s hard to reconcile, even for me.

Chad wants to see as many people as he possibly can; so if you would like to see him, please email me.
He has mentioned having a gathering of friends in the very near future, and I will share details as soon as they are available.

I will also be posting items here and there about things we may need in the future: meals, lawn care, etc.
Please keep an eye out for that if you would like to help.

Also, we want to specifically ask that no one treat our children any differently or speak about Chad’s condition around them.
Children have no real concept of time and we feel it’s best to keep our routine as normal as possible for as long as possible.
Carys is so smart and will figure things out quickly if people are acting differently around our family.

Thank you all so much for your endless support, prayers and positive thoughts.
Although this development hurts to hear, we are also relieved to have the answers we’ve sought for so long.
We plan to make the best of this Summer and spend a lot of time building memories for our children.

Since Chad’s seizure in May, I haven’t had much to share. Things have been relatively quiet on the Chad front.
He is having a few issues, but nothing completely unexpected.
Some days are better than others, and we just deal with it. Everyday is a new normal.

Chad has had a problem with his right side (arm & leg) for quite a while. Neither of us feel he fully regained his strength after his tumor resection in March 2009, despite frequently passing the routine neuro evaluations for strength control.
He has tremor-like movements in his right hand daily. If he were to hold a sheet of paper in his right hand as still as he possibly could, it would still wave as if a breeze were blowing.
His right leg and foot have started to behave a little (more) erratically since the May seizure.
When we saw his neurologist at the end of May, she finally diagnosed him with Apraxia on his right side; which is a disorder of motor planning. It’s caused by damage to specific areas of the brain, characterized by loss of the ability to execute or carry out learned purposeful movements.
He has a hard time going up and down stairs, as he just cannot make his right foot move the way it should. This means he trips and sometimes falls; and he fell quite a bit last week.
Although I don’t see it in the immediate future, I think having a cane of walker will be very beneficial in time. There is nothing we can do about the Apraxia; we just have to recognize (and remember) Chad’s limits. The lack of motor control is more exaggerated when he is over-tired, for example.
Chad’s memory is still patchy. He remembers lots of things for different reason ans associations; and sometimes it baffles me what he actually does remember versus what he does not. The brain is a tricky, tricky thing!

He is having some increased difficulty remembering his medications, their purposes, his medication schedule and ordering schedule.
I try to give him as much autonomy as possible with his medications, and I check behind him frequently.
With the addition of new meds and changes in  ongoing drugs last month, he has just been a little more confused.
He has been organizing his pills in a pill box since this journey began in November 2007; but it’s getting a little complicated.
Last week, I made us each a list of his current medications, dosages and schedules for each of our wallets. I just couldn’t remember all the changes recently, and felt it best to have a list to hand to the nurses when they ask for changes in meds.

Just this morning, I made a new list for Chad to tape to his medication locker.
It lists each medication and how many pills equal the proper dose. There are two columns for AM and PM, so I hope this will help him feel more in control of counting out his medications. And I will feel better when I double-check behind him.

The ordering part is driving me crazy. I wish I could order everything on one specific day of the month. It’s just not working out that way – yet.

We venture to Winston-Salem next Tuesday (June 29) for another MRI and a discussion with Dr. T.
We still have so many questions about Chad’s current state of health and mental clarity — and I’m growing increasingly frustrated with the lack of answers (or a plan of action).

Thank you for your continued prayers, support and positive thoughts.