Tuesday, September 22, 2009

Final update on Steve

As many of you already know, Steve passed away Monday morning, September 21.

There are no words to express the magnitude of this loss. The world is lesser for having lost him; we are better for having known him.

I can't begin to thank all of you for all the support you've given me and my family for the last two years, and especially the last few weeks. You have our deepest gratitude.

I am putting together a memory book of Steve, so if you have any stories or favorite memories of Steve that you'd like to share, please send them to me to be included.

Sunday, September 20, 2009

Steve status

Mr. F, Monkey, Grampa and I are watching the Bronco game with Steve. We had his hospital bed all set up in the living room right in front of the giant screen t.v. so he can keep up with all his football when he's not dozing. Mr. F is so sweet - he went and got Steve's Champ Bailey jersey and laid it over his chest since he can't put it on for the game.

Steve's had some ups and downs the last few days. Having some pain in his head, especially near the right temple where we know a tumor to be located. I can only presume that means it must be growing. In the last day or two, his breathing has gotten kind of rattly. That's probably partly due to missing half a lung and partly due to the way things progress. He didn't rest much the first few days but he slept a lot last night and some today. We are doing our best to keep him comfortable but it's hard to know just how he's doing when he can't tell us. Sometimes it seems like he's drifting away from us, and other times he's so alert and awake and aware of what's going on and the conversation around him.

It's been funny how expressive he can be without words! Especially how sarcastic and funny he can be without saying a thing. I love it when he makes a joke and I get it just from his body language. Everybody always said we had our own little language and I guess they're right. We still understand each other even without talking.

We've had a parade of people in to visit Steve since we brought him home. Work colleagues, college friends, high school buddies, family. All of them hold Steve in such high regard - everybody loves him. A trait he has in common with our mom. And it's been really great for me to see guys I've heard a million stories about but haven't seen since I was a little kid, and to put faces with the names of other people I know to be part of Steve's life. Steve's been thrilled to see so many dear friends and just lights up when I tell him who's coming to visit next. I know he sure wishes he could chat with them like he wants to.

Talking with everyone and especially receiving the all the emails from all over has been amazing. I always knew that Steve was a wonderful, generous, kind person, but I'm his sister - I'm prejudiced. Hearing the glowing way others speak of him and the great stories they tell has made me so proud to be his sister and so pleased to have him a part of my life. We gave our son Steven for a middle name and I can only hope my little Monkey grows up to be just like his Uncle Steve.

Thursday, September 17, 2009

Thank you.

I'm going to be pretty busy for the foreseeable future, and I don't know if or when I'll be able to get back to everyone individually, so I just want to say thank you to everyone who's called, posted and emailed. Your words of love, encouragement and support mean so much more to me than I can convey.

We are all doing our best hanging in there and making Steve as happy and comfortable as we can. Knowing my family and I are in the thoughts and prayers of so many is helpful in so many ways. Thank you all so, so much.

Tuesday, September 15, 2009

Latest on Steve

We received sad news on Steve yesterday. We spoke with his doctor regarding his MRI from the 11th. The new scan shows further disease progression and more tumors in the brain, including regrowth in the area where he had the tumors removed on the 3rd. This is why he hasn't seemed to be getting any better since the surgery.

His medical team has done their absolute best for him but there is nothing more they can do. He is not experiencing any pain, but he will not regain the use of his right arm, nor will his normal speech return. His oncologist said it would be optimistic to expect that he has two months left. From looking at the MRIs and seeing just how many tumors there are, I am not expecting it will be that long.

We are bringing Steve home from the hospital tomorrow under hospice care. He wants to stay at his place as long as possible, and my dad, brother JT, Mr. F and I will share taking care of him. There will also be a nurse that comes in 2-3 times a week, and we are talking about hiring another nurse to help out. At this point, Steve's whole right side is weak and he has difficulty walking so he will mostly be in bed.

I am in turns numb and near hysterical with grief. Losing my mom was hard but this will be even more difficult. I have known him longer and better than I knew my mom. Not only is he my brother but he is one of my - and Mr. F's - best friends in the world. I cannot even begin to imagine what life will be like without him.

Wednesday, September 9, 2009

Not much to update on Steve

Have been in to see Steve every day since surgery. He doesn't want me to spend too much time at the hospital and protests at me if I do, but I feel like I should at least go see him every day, if only for a few minutes. Mr. F and Peanut always take me so they can see him too.

No real change - still can't move the arm much and still has the expressive aphasia (that's what the trouble finding words is called). I think he's getting a little discouraged since there hasn't been much improvement in that area.

He says he's not having any pain and is just really tired. He says he's not up for visitors or calls because it's so hard to talk and wears him out even more. I've told friends/family that if anyone wants, they can send email or cards to me and I'll bring them to him. I think that would do a lot to cheer him up.

I hung up some pictures in his hospital room - me and the baby and Mr. F - not just for Steve to look at but so the staff knows that he's a person with people who love him. And I put up a photo of me and Steve and Mr. F together at last year's Fantasy Football draft so they can see what he looks like in healthier times. Not that his nurses and CNAs haven't been great, but I like to remind them that he's not just another one in a long line of sick people. With him unable to talk much, and mostly just sleeping and lying in bed, I'm afraid they won't really get to know him as a person. Hopefully our daily visits and the photos will help.

I'm hoping to hear from the surgeon soon. Tomorrow is a week since surgery, so the plan is to assess him in the next few days and move him to the inpatient acute rehab center they have at the hospital. He's told me he doesn't feel ready to be at home on his own yet, so this will be a good step for him.

Please continue to keep him in your thoughts.

Friday, September 4, 2009

Steve's ok

Steve's doing fine. Was still a bit sleepy when we got to see him last night around 6 and had some blurry vision. Not sure yet about his arm and speech but we think both seem a little better. Fingers crossed! He has a bit of a headache but is in good spirits.

The surgeon got the mass out - it turned out to be two tumors right next to each other. It came out cleanly and he said he was happy with how it went. Apparently, with melanoma, it doesn't invade the brain tissue so much as take up space, so when they take the tumors out they almost just fall right out because they're not attached to anything inside.

One bit of bad news, though - yesterday morning's MRI was much more detailed than the previous MRIs he's had, and it shows what looks to be 12 small tumors instead of the previously thought 5. They're not sure if those are new or just showing up better on the more detailed MRI. The plan is still to get as many as they can with the gamma knife on the 14th and go from there.

Sure hope this aggressive treatment will be able to keep on top of what's happening in the brain. I wish we knew whether those were new tumors so we'd know if things are moving really fast or what.

Wednesday, September 2, 2009

Latest on Steve

So after everything that happened earlier this month with the two ER visits and the speech problems and losing the use of his right arm, Steve and the rest of us were getting increasingly concerned about Drs. Jotte & Lamond's wait-and-see approach to treatment.

The idea that Steve has a tumor in his brain that has burst and was/is bleeding, therby putting pressure on certain parts of his brain and making certain parts of his body not work is incredibly scary. What's even more scary is when your medical team basically says, "Eh. It'll get better," and sends you home literally without doing anything. Steve is so frustrated with both the arm and the trouble speaking and we've seen no improvement since they sent him home. It's terrifying, for him especially, to think that it might never get better.

With all of us feeling more and more uncomfortable with doing nothing, Steve decided to get a second opinion from the Cutaneous Oncology department at the University of Colorado Anchutz Cancer Center. We got quite a different story from them. Bottom line is that Steve is scheduled for surgery tomorrow to have the tumor removed.

We met last week with Dr. Karl Lewis, an oncologist, and also with Nurse Practicioner Amanda Brill who works for the neurosurgeon Dr. Robert Breeze. We met with Dr. Breeze today. What this team has told us is that the lesion that is bleeding is too big to reabsorb and needs to be removed. The blood/fluid surrounding it may reabsorb but the tumor itself is large enough that it needs to come out or the arm and speech won't improve. They let us look at the MRI and we saw that this tumor and the surrounding blood clot is about the size of a golf ball. And we also found out that there are four to five more small tumors, which was complete news to us. The plan is to get those tumors using the gamma knife (an outpatient procedure) on Sept 14.

This is basically completely the opposite of what the previous doctors were doing but after meeting with the new doctors, we all feel so much more better about Steve's future. It felt a lot like the previous doctors just didn't know what else to do or like there wasn't anything more that they could do. We all have a renewed sense of optimism with this new treatment plan. Basically, they feel like you have to treat melanoma aggressively, and make sure you treat the systemic disease (in the body) in conjunction with treating the brain.

I think the big difference is that Dr. Breeze's and Dr. Lewis's practices have been working as a team for twenty years treating melanoma specifically, whereas Dr. Jotte and Dr. Lamond are just two doctors that I don't know if they ever actually spoke to each other regarding Steve's treatment, let alone formed a plan of attack as a team. I feel personally that Steve's prognosis is much better with this new approach.

Surgery is at noon tomorrow following an MRI at 10:15. It will take 3-4 hours, and then he'll go to recovery so we won't see him until the early evening. He'll spend the first night in the ICU, but then they plan to move him to a regular room early to mid day Fri, and hopefully have him home by Mon. The arm and speech could be better right away - within hours or a week, or it could take a few months - no way to tell ahead of surgery. It's even possible, since they're mucking about in the motor strip of the brain, that the arm and speech could be worse for a while until the swelling goes down. Should that happen, they'll assess him and may send him to an acute inpatient rehab center for a short time until they feel like he can take care of himself.

So, please think of him tomorrow and keep him in your thoughts and prayers, send good karma, rub a rabbit's foot, whatever you can do to help him out. And as always, thank you so much for your support. It means so very much to him and to me.