Surgery has been postponed....

I wanted to give everyone an update on where things are with my treatment. 

We found out that in early January that the tumor is not "dead" like we thought, and it has grown significantly.  As many of you know, the pain is almost, if not more painful then when first diagnosed.  So they sent me for an MRI and CT Scan.  We went to see the Doctors today to figure out what to do next. 

Most importantly, the cancer hasn't spread other than the tumor growing.  There is a new small spot on my liver that was never there before, but it may not be anything - they will continue to monitor it.  The three small spots on my lungs have not grown and they will continue to monitor them, as well.  They gave me new meds for the pain (Fentanyl patches supplemented with Percocet) and advised me to start walking with a cane to take pressure off of the area.  The pain is from the bone right now, and as you know, bone pain is tremendous. 

Chemo started again on Wednesday, January 11.  They plan on a total of three (3) chemo cycles (1 every 2 weeks), just like the outpatient sessions I had before.  They are going to try every two weeks as long as my body can handle it (it's a pretty aggressive treatment).  The main goal right now is to prevent the tumor from growing and to prevent the cancer from metastasizing.  In 6 weeks, they'll do more scans and evaluate the next step.  It will be either radiation, surgery or possibly more chemo - we won’t know until then. Probably the hardest news is that surgery is going to be much, much harder than anticipated.  Unless the tumor shrinks, they are now going to have to take the entire left side of my pelvis, as well as the hip socket (they will use bone grafts and plates in place of those).  After surgery, I'll be monitored in ICU for several days, a week in the hospital, and 6 - 8 weeks of rehabilitation.  Also, the likelihood of chemo and/or radiation after recovery from surgery is good.

We definitely could have gotten worse news today, so we'll take this the best we can.  I’m not giving up.

Update for the Next Phase

Hey everybody.  Thought I would do another post to update everybody on Phase 2 of my treatment.  I have to admit that I was wrong about what is going to come next.  I would’ve bet money that Radiation therapy is what’s next, but now that we’ve met with both the Radiologist and my Surgical Oncologist, we know that surgery is the best option.

As we’ve said in previous posts, they noticed new bone growth, which was good.  The bad part of it is that there wasn’t enough bone growth for Radiation therapy.  If you were to look at my most recent scans, it is almost like my pelvic bone is broken.  There is bone there, but since there wasn’t enough, the remainder of the tumor is what’s filling the gap.  This is also why the pain has gotten worse (although not as bad as when I was diagnosed).

Based on that, if I were to do Radiation, it would stop the bone growth that is still going on, which is something we don’t want.  So after consultation among the team of doctors on my case, they felt that surgery would just be best (especially since I might have had to do surgery after radiation anyways).  The process is actually pretty interesting.  They are going to remove the part of the bone that has the tumor (including the tumor) and replace it with a cadaver’s bone.  They will then put metal plates around it for strength and stability.  What they expect is that as I heal, my bones will regenerate the bone and bring it back to life.  Pretty cool.

The surgery itself is a big deal.  Pelvic surgery of any kind is a tricky thing to do, but I was told that if I had to have a surgery, mine is one of the easier ones, not like a complete replacement or reconstruction surgery.  The surgery itself will take about 4 to 4 ½ hours.  I’ll be recovering back on the 11^th floor at UMH (I requested this so that I could have all my favorite nurses again).  I’ll probably be there for 3 or 4 days and then, depending on how I am responding to everything, I will either be sent home or to a rehab facility where I’ll probably go through physical therapy.

I gotta admit that I am a bit scared (I haven’t had a real surgery since who knows when), but I’m more scared about the post-operative pain.  I just hope that it’s not as bad as what I am thinking it could be.  Thankfully, I have a great support system in my wife, my parents and my friends and family.

That’s about it for now.  Just wanted to update everyone on what’s next.  Know for now that I’m ok and enjoying my little break from any kind of treatment.  Thanks again to everybody out there.  All of your well wishes and prayers have been very much appreciated.  I truly and sincerely thank you all.

One Long Year

Hey everybody.  I know I haven’t posted in a while, but after yesterday’s final treatment, I wanted to share some thoughts.

It has been a long year to say the least.  I remember back when I was diagnosed (February 14^th), having cancer wasn’t so bad (don’t ask me why it felt that way), but having to through 17 treatments……that’s when the tears started flowing.  I just didn’t know how I was going to make it through a full year of chemo.  There is one thing I didn’t count on though, and that is all of you.

I was and am still amazed at the amount love and support from all of you.  Both friends and family have always been willing to talk when I wanted too, and even to just back off, if that’s what I needed.  I cannot tell you how much that has meant to me over the past year.

I also want to give a big thank you to all of nurses that have been with me as well (Sylvester – Deerfield Beach, Sylvester Miami – CTU and UM Hospital – Floor 11 North).  These men and women are unparalleled in what they do.  They are amazing people who have endless compassion and a nack for cheering people up when they are at their most vulnerable.

The other two people I have to give a special thank you are to my incredible wife Amy, and my father Neil.  Without these two people, there is no way I could’ve gotten through this.  There is absolutely no way I can ever truly thank them.  Amy / Dad, I love you both more than I can say.  Thank you!!

I know Amy talked about the next course of the treatment, so I won’t go into that now.  When we know more, we’ll update everyone.

Thank you again to everybody.  It is so very much appreciated.

Scott

Hooray!! Today is the last chemo treatment!

Hello friends and family!

The last chemo treatment is underway!  Today is an outpatient treatment, so we should be done by about midnight.  I'm amazed by his strength and courage - he's been so brave and such a fighter.  I'm more proud of him that I can put into words.

Scott has plans to write a big post in the next day or so to close this chapter of his journey.  In the meantime, a quick update about next steps:

We have an appointment with the surgical oncologist on 11/14, where we will hopefully make the final decision to proceed with radiation.  We meet with the radiologist for another consultation on 11/18.  We'll be able to update everyone around that time.  Radiation (if that's what he's going to do) won't likely start until the first week of December, so he is looking forward to going to a break.  I guess we'll have to rename the blog to "Scott's Radiation Adventure" at that time.  :)

I can tell you one of the first things he's going to do (after a couple weeks and his counts are up) is go to a Movie!  He's had to refrain from going to Movie Theaters since starting chemo.  I forsee a Thanksgiving movie (or two) in our future. 

We hope all is well with all of you.  Talk to you soon!
Amy

Hello from the last inpatient treatment!

Hello everyone - I'm happy to say that the last inpatient treatment is under way. It's very bittersweet because we love to see our friends here at 11 North. They really are Angels! Scott is so happy to be almost done.

We met with his Dr. & PA this morning, and things are fairly "status quo". Scott is having some pain again in the site of the tumor, and because of that, he had a CT scan last week. There are no changes in the tumor or the bone, so they aren't sure what's causing the pain - it could be the tumor is inflamed or aggravated in some way. They aren't worried about it right now, so we'll see how radiation goes.

Speaking of radiation, they said we'll schedule an appointment after his last chemo treatment on 11/7 to discuss the plan - radiation or surgery & if radiation is still the plan, how that's going to work. So, we'll probably have more information on all of that in mid November.

You know I like to leave you guys with a smile, so here are some pics of the hat Scott has been wearing in the hospital - his Spock hat! Our friend Maevan made this for him. All the nurses get such a kick out of it & I thought you would, too.

We hope everyone is doing well - love & hugs to all!

Amy

 

Just Keep Swimming

Hello all,

Scott is having his 14th chemo treatment this week - only 3 more to go after this! He's inpatient at UMH this week and getting to see the nurses he likes so much. His Beloved Brenda has been his Nursing Assistant for the past two days, so that made him happy. When I saw her tonight, she reminded me I still have to share Scott with her. :)

Whenever I leave after visiting him during an inpatient treatment, he walks me to the elevators (IV pole and all) and I give him one more kiss before I leave. If the nurses are at the station when we walk by, I usually make a joke about trying to bust him outta there.

Tonight, though, when I got into the elevator, there were two woman already in it and one of them was clearly trying to fight back her own tears from saying goodbye to her loved one. She watched me kiss Scott goodnight and get into the elevator, and I glanced at her sympathetically. Even through her pain, she said to me "everything is going to be ok". I smiled and said "I know", and I told her that Scott and I say "Just Keep Swimming". I asked her if she'd seen the movie Finding Nemo and was familiar with the part where Dory sings "Just Keeping Swimming" and she yes. She said "It's funny, I never thought of it that way before". We were riding down 11 floors in a hospital elevator - and that takes awhile with all the stops - so we were silent the rest of the way. I got off on the floor above hers and we both looked at each other as I walked out and she said "Thank you and God Bless you". I said "Same to you and remember to just keep swimming" and that was it - we went separate ways.

I will probably never cross paths with that woman again, and can only hope and pray that her loved one has the good prognosis Scott has, but that moment was such a profound little moment that had a big impact - an understanding between two people caring and hoping for their loved one to recover and how important is to be strong and share at least a little piece of encouragement when you can. It struck me so much, that I didn't start crying until I walked out of the elevator, and that little profound moment reminded me of the levity of this situation. It's become so routine in many ways - it's been almost 8 months and Scott has made it so far - I sometimes forget that he's fighting for his life. He's so lucky to have the prognosis he has, and it's overwhelmingly humbling when I think about the people that don't. I cried for all those people, and us - but only for a little bit - because I know things will get better soon.

Just a little reminder to everyone to appreciate those little profound moments that are moving - and to take a minute to smile and be encouraging to someone - it can make a bigger difference than you think.

And with that, I'll leave you with a video clip on Dory's view of what to do "when life get's you down" - Just Keep Swimming :)

Love to you all,

Amy

Only 4 more to go!

Hello all,

Sorry about being a blog slacker, but there’s not much going on with Scott’s Chemo Adventure right now – and that’s GOOD news! He’s hanging in there with his chemo treatments – only 2 more inpatient and two more outpatient to go. He did fine during his last inpatient stay and he was happy to be at UMH hospital instead of Jackson. He got to see almost all his favorite nurses (except for one who was on vacation) and was much more comfortable. He still has his cough, but he saw an ENT today who said everything looks fine and to continue to keep an eye on it.

He also had another CT scan a few weeks ago, along with an x-ray. The tumor is continuing to shrink just a smidge, but there continues to be a small amount of bone regrowth, as well – so all-in-all things are going well.

We don’t know anymore about radiation versus surgery yet – we’ll know more when his chemo treatments are over, which right now, is scheduled to be early November. His last actual treatment should be on November 7^th – whoohoo! If radiation is the way they go, he’ll likely start radiation three weeks later (or so). (I wonder...will we have to rename the blog to Scott's Radiation Adventure at that point?!??)

We hope everyone is doing well. I know you guys are checking the blog because I’ve been getting in trouble for not updating it :) so I wanted to send a quick post.

Love,

Amy