The Road Ahead

Before I move on to the title of this post, I just need to catch up a little from yesterday.

After leaving Tom Sunday evening, with him walking me down to the elevators feeling pretty good, I was fairly confident he would be able to come home on Monday.  I spoke with his nurse before I went to bed and he was doing good.  I didn't get a chance to call in the morning before I rushed out the door, leaving Nathan behind with Auntie Sasha (making a nice mess of toys for her!).

When I arrived by Tom, I asked his nurse how the night went and it went horrible.  He was up every 2 hours needing pain meds, anti-anxiety and required a babysitter (a clinical technician) to sit in the room 24 hours because he kept trying to get up, setting off the bed alarm.  He needed help (and still does to a degree) getting from bed to bathroom.  I was heartbroken to hear this turn of events which made everything sound like he wasn't going to get to go home (monday), and he didn't.

The Road Ahead
It is going to be rough and only get harder.  I need to remind you a little about the progression of Tom's cancer over the past 8 months.
May '10 - found lump, learned cancer had returned
June '10 - spent going back and forth to Madison for tests, and consult with Melanoma specialist.
August '10 - had final major surgery in groin (original site where the Melanoma keeps returning)
Sept '10 - post surgery follow-up CT scan showed growth due to microscopic cells having been left behind from surgery.  (yes, it happens, there are no set of eyes and no medical equipment that can detect microscopic cells)
Oct '10 - recovery from surgery, followed by beginning of 6 weeks intense radiation
Nov '10 - completed radiation, CT scan follow-up showed significant growth in the groin as well as lymph nodes up to underneath his lungs causing uncontrollable hiccups.
Dec '10 - recovery form radiation
Jan '10 - one cycle of Temodar chemo pill, our vacation, confusion began
Feb '10 - went in for pain (especially in the neck), confusion, and necessary blood work before second cycle of Temodar chemo pill. CT scan and MRI showed major progression throughout Tom's body, full of melanoma, as well as a leision on his C2 vertebrae.  Spent 6 1/2 days in the hospital.

Tom's Oncologist has explained to me and the family how every step we took to fight this, the melanoma came back as if it was saying 'na na, I'm still here...'  and had spread/grown each time.  With Tom's state of confusion and it having become worse after the seizure he experienced on Thursday morning, we had to really think about, and ask Tom, what to do next.  There is another chemo option, but the chance of it even touching this amount of melanoma that now fills his body is maybe a 1 in 10 chance.  So, say he goes through this chemotherapy.  He will get even weaker, be extremely sick, have very little quality of daily living.  Knowing what Tom went through in 2005, I know for a fact that he never wanted to go through that again, and if he had to, to give him 5 more years with Nathan and me, he said he would do it.  The Dr explained to Tom his options and Tom said, No, that he just wanted to be with this family.  At this point, Tom's whole body is weakening.  For example, Wed morning last week, Tom went in the fridge to grab the new full gallon of milk to pour himself a glass of milk at breakfast, and the gallon was very difficult for him to manage (I stepped in and helped him).  Then, on the way to the 10:30am appt, on the highway just before our exit, I could see him fiddling around and his hand went to the door handle and I quickly locked the doors and freaked a little 'ah, that's the door!'.  He then rolled the window down a little and sat there.  I asked him if he was too hot, I could turn the heat down, and he said No, he wasn't.  So I asked why he rolled the window down, and he replied, frustrated, that he didn't know, so I rolled it back up.  We got off our exit (still having about 4 miles to go) and he said something to the effect that the car ride seemed to take forever.  Those are just a few minor examples of the difficulties Tom has been facing, prior to the seizure.

What's next
Tom was able to understand and sign important paperwork that allows me, whom he named, to make decisions on his behalf if he should be unable to do so.  That night, the family and I met together to discuss how we felt about Tom's next steps, keeping in mind Tom's wishes and what he has expressed to all of us over the past 6 years.  We all were in consensus that we do not want Tom to have to endure anything painful and torturous that would not give him a better quality of life after going through such treatments.  This has been extremely difficult for all of us, including Tom, to accept.  This is not something you think you will ever have to even consider, especially at our age.  So, to make this clear, and I am having a difficult time even typing this.... Yes, Tom is now on hospice care.

Tom's Oncologist and Palliative Care Doctor both came in to visit Tom this morning.  His Palliative Care doctor was his first Oncologist in 2005, so he had seen Tom through chemo at that time, then in 2006, he named his replacement who has been Tom's Oncologist since, through today.  Both Doctors commended Tom on his strength and courage having gone through as much chemo, surgeries and radiation as he has in his lifetime.  They both agreed that Tom has gone above and beyond fighting such a tough battle, and told Tom not to ever wonder if there was something else he could have done.

I hope you all are following me on this.  Please know and believe that as hard as this is, it is even more difficult to write about it.  Tomorrow, the hospice nurse and social worker will be here to help us get everything we need to ensure Tom's safety and comfort.  Tom clearly understands what this means, being on hospice care, and this is what HE wants, and his family and I stand behind him in support and love.

So, how is Tom doing right now?
I know this is a top question on all of your minds.  Tom is very glad to be home!  Back up to this morning... Tom took a relaxing hot shower (his favorite thing to do because the heat feels so good on his sore body), and settled into bed.  We spoke with the Drs again (which is explained above), and confirmed he would be going home today.  The care management team worked on getting us an appt and confirming insurance with the hospice agency.  It took quite a while this morning waiting for that and discharge paperwork, and Tom was very antsy.  He kept asking to take a shower.  He has a pain patch on his neck that lasts for 12 hours and cannot get wet, so we had to keep reminding him of that, being the reason he needed to wait till before bed to shower.  A few minutes after I arrived at the hospital, I realized Tom was talking to me, to hold a conversation, and was not making any sense at all.  He struggled to get the words out that he wanted to speak, and what he put together didn't make sense whatsoever.  I asked him if he was confused and he said No.  I alerted the nurse because he wasn't doing that the day before, although he did sleep most of Monday after a busy weekend of visitors.  That, and it wasn't the same kind of confusion as he had previously (car ride on Wed, as well as confusion during our FL vacation).  She said he had been doing that last night and this morning before I arrived.

It's hard to explain.  Tom knows who he is, he knew he was in the hospital, he knows who other people are, recalls times past, but when he wants to express something (a feeling, an idea, a desire, dices something around him or on tv), he has a difficult time finding the words he wants to say, and what he does say doesn't form a complete thought nor do the words he says make any sense when used together. Tom does not think he's confused, he feels he makes sense.  He has been using the word 'intense' to describe anything.

I need you to understand this.  This confused/odd talk is normal, unfortunately, and it will probably only get worse.  It is caused from that melanoma lesion on his C2 vertebrae high up in his neck, affecting his brain.  It's only a matter of time before the melanoma attacks his brain and causes more damage.  Hospice care will help me to learn how to manage it to best help Tom get through his thoughts.

I don't know how to conclude this post.  I know a lot of you probably have questions, and I'm sure a lot of you would like to come visit Tom.  We don't want to overload Tom with too many visitors per day, because it is very wearing on him.  We also have our household to run, and family and friends will be helping me get things done as well as hang out with Tom when I need to be away from home.  Tom does need 24 hr care, and for at night I have a baby monitor set up in his room so that I can hear him and wake up if he wakes.  (yes, if you hadn't known, Tom sleeps in our big bed by himself, a result of many difficult nights for him finding a comfortable spot to sleep and my snoring problem, haha, at least Nathan doesn't mind --we co-sleep).

Thank you, everyone, for offering your help and sending me your phone numbers to call.  I greatly appreciate all of the help and support.  I will not hesitate to phone you if I need.  Thank you, from the bottom of my heart.  Keep the prayers coming, as we need them now, just as much as ever.  Thanks for adding us to your various prayer chains as well.  Please pray for comfort and peace of mind.

Love,
Roxanne