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

Welcome to the Geller House of Germs

Admission: Two.

Hello all! I know it's been awhile since we checked in, so I wanted to say hi and give everyone an update. Scott is hanging in there, but as the title implies, he's been sick. He caught a cold back on the 11th and is still fighting it. I caught his cold several days after him, and as it goes with me, It promptly moved into Bronchitis. I was able to get better after several days, but Scott isn't so lucky. With the chemo, he doesn't have the immune system to fight a cold like the rest of us do. So here it is, day 11, and he's still coughing all the time. I feel horrible for him - it hurts so much to keep coughing like that. He's going to see Dr. Fernandez in the morning, but will be postponing next week's inpatient treatment for a week. He's barely gotten more than a few hours of sleep at a time since getting sick and he really needs to get better before more chemo. I'm really hoping Dr. F can give him something much stronger to help him fight it. He says he's taken Tylenol with Codeine cough syrup once before and it knocked him out so much that his then roommates all had to pick him up and carry him into his room - God help me if that happens again!

Please say a prayer and keep your fingers crossed for him that he feels better soon.

One of us will update again after tomorrow's doctor appointment.

As always - love and appreciation to you all!

Amy

Treatment 11 has come and gone

Good very early morning everyone.  Treatment 11 is now completed.  Normally, I'd be in bed by now, but this treatment ran longer than normal so after a very refreshing shower, I'm wide awake, so I thought I post. 

11 treatments are now complete and only 6 more remain.  I gotta say how over all of this I am, but still, 6 left.  Hard to believe how much I've already completed.  Well, I am feeling fine, tired (but still wide awake) and a bit queasy (the car ride home after a treatment never really sits well, even with the anti-nausea meds I have), but overall ok.  Tomorrow should be good to rest up and get ready to go back to work on Wednesday.

The only thing new with my treatments is that on my outpatient treatments, they are swapping one of the drugs called the "Red Devil" (Andreomycin) for a another one (can't remember how to spell it).  This is because I have reached my LIFETIME limit of the drug.  If I ever have a recurrence of the cancer (of any kind) and have to have it, I can't; ever.  But that's ok.  The new drug doesn't cause any kind of strain for my heart, so that's good.

The other new thing is that went I go in for my bloodwork next week, I will also be going in for a CT scan.  They want to check the progress on everything and compare it to the one I had about 2 months ago.  So hopefully the next time I go to see the Docs, I will see if there is more/better bone growth and maybe the tumor decided to stop be stubborn and start shrinking.

Anyways, that's about all from me here in Chemoland, so I hope you are all having pleasant dreams as I write this and that all of you are always in my thoughts.

Love you all,

-S

Radiologist Update

Hi Everyone! Sorry for the delay in posting. I promised y'all an update from the Radiologist appointment on Friday, so here it is. :)

We met with Dr. Keish, who we liked a lot. Dr. Adams-Conway had told us that he is the doctor she wants Scott to see - so much so, that if he can't logistically get down to Miami everyday for radiation, she'd rather do the surgery than have him get radiation from anyone else. This is so critical because she wants to make sure the radiation is targeted and the rest of his body is protected. Radiation damage to his bowel and bladder could cause lifelong problems, and could damage the area so much that surgery would not be a good option as a "back-up" if needed. Plus, his skills would minimize side effects from radiation, which is more good news for Scott.

So, we met with Dr. Keish and he pretty much confirmed everything Dr. Adams-Conway told us back in this post, but we did get a bit more information. Radiology is still the likely option over surgery, but it's not definite yet. The doctors and Scott will make a final decision after chemotherapy is done. They still feel that surgery is going to be a very hard recovery for Scott. The doctors want to keep monitoring the progress of the tumor and see where he's at come November. If radiology becomes definite, he'll get a three week break after Chemo before radiation starts. It will be every weekday for 5 - 6 weeks. This is going to very hard on Scott to drive an hour or more to downtown Miami, to get radiation for a half hour, and then drive back to either home or work (depending upon the time of day), but it's the right thing to do and they'll work with his work schedule. Dr. Keish advised he'll feel tired for the last few weeks and for the few weeks after, but other side effects should be minimal. (yay!)

Scott's still recovering from last week's inpatient stay, but he's feeling pretty good and his spirits are still good. He'll be back in Monday the 8th for his next outpatient (provided his counts look good). This biggest issue for him lately, besides being so tired, is beating the heat - the poor guy is a walking oven. We're happy we got to finally meet our adorable Godson Wade the weekend before and see our good friend Megan - now we're looking forward to all this being done and flying out to Indiana to meet our Nephews. Here's a happy picture for you guys!



As always, thanks so much for all of your love and concern - we're so grateful for it!

Love,
Amy

Checking in from treatment #10

Good morning everyone! Just wanted to check in and say hi as Scott is working through treatment number 10. Can you believe it’s number 10 already? We can’t – sometimes it feels like it’s gone fast, other times it feels like it’s been an eternity (especially for Scott). He’s inpatient again this week, and unfortunately, at Jackson again. At least this time his room is not directly across from the ice machine and nurses station. I’m working, so I’ll be going down to see him tonight. He’s going good – bored and tired, but at least nothing eventful is going on. He tries to sleep a lot because he can never get a good long “run” of uninterrupted sleep. They come in often to give him more medicine, or to take more vitals, and the IV beeps all the time.

The Dad’s are helping and are there for us – Scott’s Dad is still spending nights at the hospital with him and my Dad is down from NJ to be at the house at help me with the dogs. We’re very grateful for the help!

Friday is the appointment with the Radiologist, so we should have some updates then. I hope everyone has a great week!

Love,
Amy

Happy Birthday Scott!

Hi all! Tomorrow is Scott's birthday, and he's enjoying a quiet week off from Chemo. His next inpatient is Monday, but between now and then, he'll be relaxing and celebrating his birthday. His counts look great and, overall, he's still doing very well!

Scott: Happy Birthday, Babe. I love you!
~Aim

More Behind Me than in Front of Me

Hey everyone.  It's Scott this time.  I know it's been a while since I posted, but this is a milestone I wanted to share with you.  First I need to thank Amy for keeping up with the blog.  She does a fantastic job with it.

Well, my 9th treatment is now complete.  That is a lot of treatments, especially considering that a lot of cancer patients would have been done by now.  And I still have a lot left to go (8 more treatments).  But the great thing is that there are more treatments behind me than in front of me.  I still can't believe that I've made it this far.  It seems like it was just a couple weeks ago that my oncologist was telling me "17 treatments" (that got me to cry more than hearing I had cancer!!), and now I only have 8 left.  I can't tell you how happy that makes me. What makes me even happier is knowing all the well wishes and prayers I get from all of you.  It's what keeps me going.

As Amy said in the previous post, we don't know about radiation yet.  We will be meeting with the radiologist before I am admitted for my next treatment, July 25th.  At that time, I am assuming I will find out how much radiation therapy I will need.  My guess is a minimum of a couple of weeks, but hopefully less.  When I find out, I will let you know.

Also, as Amy said, my next treatment needed to be postponed 1 week, which I guess is a good and bad thing.  I didn't want to postpone it, but I have to admit it will be nice not to have to spend my birthday in the hospital.  I really don't want to push any treatment out so I can be done with all of this that much sooner, but what can you do.  The thing that sucks now is that my next outpatient will be on Amy's birthday.  I hate that and do not want her to be thinking about it on that day.  Maybe I can see if I can do it on Tuesday instead.  Will have to ask about that one.

Other than that, I am feeling good.  Got some sleep today, which was great, but I am looking forward to going back to work tomorrow.  I hope you are all doing well.

Scott

Checking in from treatment #9

Hello all! Just a quick check-in - Scott's chemo was postponed from Monday to today because of the 4th of July holiday. All is going well and he'll be home before midnight this time! I'm a bit heartbroken today because this is the first treatment I'm not there for. :( I got a new job, which is a great thing, but bad because I am no longer consulting and have the flexibility to be there as I once did. I knew it was going to be hard, but I didn't think it would be this hard. Of course Neil is there with him and that makes me happy, but I miss him terribly. (He's actually probably grateful for me not being there to nag him! lol) My new boss is kind and understanding and I will still take time off for the really important appointments and happenings. I will also still be keeping everyone updated as best I can via the blog.

He's going to post next, but not tonight. The next inpatient treatment is also being postponed a week because of this one being rescheduled, so I will be changing the calendar. We're a week behind now, but still going strong - he's still on track to be done with chemo on Halloween (that is if he doesn't get bumped again for Labor Day). I'm hoping that even radiation will be done by the end of year so we can just cross 2011 off the list and move on to 2012! We still don't have an update about the radiation schedule - we'll know more about that in a few weeks.

As always, we hope everyone is doing well and that they had a great 4th!

Love,
Amy

Last day of treatment #8

Hello all! Just a quick check-in to let you know we are on the last day of treatment #8. Scott is SO ready to go home - it seems like the last day drags the most. It's been a pretty uneventful week, other than the rather annoying fact that he was admitted to Jackson instead of UMH. Scott's normal doctor is on leave this week, so he was admitted under another doctor and this doctor only admits to Jackson. It took 3 hours just to get admitted! The nurses and doctors here are nice enough, it's just old as dirt and not as comfortable. In the end, is care is good and that's what matters the most, but it does make it easier to be at UMH with his normal peeps. (They all know him and love him there). He's going to post in a few days and say hi. (Plus, I always let him be the one to change is "chemo counters")

Hope everyone has a great weekend!

~Amy

Scott gets an A+

An A+ transfusion, that is! He's okay - but he was delayed in going home yesterday because his hemoglobin was low enough to need a transfusion. He wasn't VERY low, but low enough. They kept him until about 6:30pm to give him two bags of blood (thank you to all of you that regularly donate blood) and monitored him for awhile to make sure there were no reactions. We now know his blood type is A+, which he didn't know before. So if (God forbid) we ever need to make a serious call for donations and platelets, all you A+ people be on standby, ok? :)

He's doing good today. He's home and resting because he's exhausted, but he plans to be back at work tomorrow. Thanks for all the love and concern!

~Amy

The update from Tuesday and fever strikes again

Hi guys! It's Amy doing this update. Sorry for the delay - it's been a typically busy week. Unfortunately, it got even more busy for us Thursday night when we had to go back to the hospital in Miami because Scott had been running a fever all day. We're still here, but he's okay. His fever broke shortly after getting here late Thursday night, but they are doing the same drill as last time - monitoring blood cultures to make sure there are no signs of infection and pumping him full of antibiotics. Fever is a real critical issue for chemotherapy patients and no one is taking any chances. Right now the plan is to go home tomorrow and Scott is counting down the hours. The silver lining is the room he's in - it looks like a hotel room! Seriously, it's huge, there's wood floors, a sleeper sofa, a new flat screen TV and beautiful granite countertops. It's just luck we got this room. We came to Sylvester to be admitted, and they started construction on the inpatient rooms on the 2nd floor (where Scott was on Monday night). They had us come up to the 4th floor, where they had just finished construction on rooms that are intended for bone marrow transplant patients. At least being in these nice rooms eases his frustration over being here just a little bit. (He's still not a happy camper!)

As for the update regarding surgery or radiation, it looks like radiation is what's going to happen. There's several reasons why they are recommending radiation. His tumor is located very close to the Sacrum (shown below) and very close to some critical nerves - in particular, ones that are important for bowel and bladder functions. If they surgically remove the tumor, they basically have to "graft" bone back in it's place and the location makes it harder for the surgereon to have something to graft to. Plus, when they remove it, they have to remove the tumor with enough "clean" (cancer-free) margins on either side. The location makes this harder. Another issue is his recovery - the surgical procedure for this will make recovery difficult. His doctor said surgery would be harder on him than radiation.

Here's a picture of the APPROXIMATE location of his tumor. Y'all know i'm not a doctor and we can't understand where it is very well from the images they show us, but this is about where it is.

As for the when, where and how about radiation, we don't know much yet. Dr. Adams will be meeting with other doctors next week to determine the plan. (It's actually a weekly "conference" they have.) Since Scott is just so special and unique :) a panel of doctors are going to review his chart and assist in making some decisions about which of the many methods of radiation they will be giving him. Several factors are up in the air, like how often, whether they'll do it soon or after chemo, and very importantly, how they are going to protect his bladder and bowel (which will be in the way). We should hear more about that towards the end of next week and will probably get an appointment to meet with the radiologist directly. We'll keep you posted.

Also, it turns out that the tumor has actually shrunk very little, but Dr. Adams is still very encouraged because of the new bone growth. The significant decrease in his pain may be just due to a decrease in inflammation around the tumor, but it's still a good sign. The way Dr. Adams put it is that when we first saw her, the tumor and bone were fighting for space and the tumor was winning - now bone is winning. :) She hasn't seem him in several months and was very pleased about how good he looks and how well he is moving and getting around.

We hope everyone is having a great weekend and we send our love to all of you.

~Amy

Checking in from treatment #7

Hi all! Just checking in from treatment #7. This treatment is a bit different - it's supposed to be a one day outpatient, but it ended up being a one day INpatient. Scott gets labs (bloodwork) periodically between treatments. This is to keep an eye on his white blood counts, red blood counts and platelets (among other things). Last Wednesday's labs showed a low platelet count - not too low that he'd need a transfusion, but low enough to postpone chemotherapy until they get better. So, the plan from Liz was to do his "pre-chemo" labs in Deerfield, see how they look, and then determine if chemo is still on. So, Scott once again surprised everyone and his platelets bounced back and chemo was a go.

The difference is that he got admitted this time, but that's more out of comfort and convenience for him. We wouldn't end up leaving until 1 or 2 am and we have to be back down here in Miami at 10:45am for another Dr. Appt. By being admitted, he can just stay down here and rest. We're in a different place, too - we're in an inpatient room at Sylvester, rather than at the UM hospital. These aren't private rooms, but there's a very nice couple in the next bed and Scott and him have been chatting. We saw Liz this morning and everything else is looking good. Dr. Fernandez wasn't here today, but Liz is such a sweetheart so Scott doesn't mind. She showed us the MRI/CT images of his tumor and it was fascinating to see where the new bone was growing.

Tomorrow's appointment is one we've been anticipating for awhile. Tomorrow, we meet with his original Oncologist (who we learned is also a surgeon) to discuss whether or not Scott is going to do surgery, radiation, or a combination of both. We hope to come out of that appointment with a bunch of updates, so one of us will definitely do a blog post after that. Stay tuned!

Scott says "hi" to all and is laughing because it means two things right now - he says hi to all of you and he's feeling a bit "hi" because they just gave him a dose of Ativan! :) He's extra funny when he's all loopy! He always orders "Purée Melanga" (a Cuban favorite) and he says it like he has an accent and he cracks himself up when he does it. The "accent" isn't the funny part - watching him crack himself up is!

Love to all!
~Amy

Scenes from an inpatient treatment

Hello everyone! It's Amy again, checking in to let everyone know that Inpatient #3 is going well and sharing some pictures of Scott's world while he's undergoing is inpatient treatments. Here's a day in the life...

The Oncology floor is 11 North. We've met the majority of the folks in this picture, but only a handful of them treat Scott. Nurses have to go through extra training and requirements to be able to administer Chemo. Here are some of our "Regulars" and are all wonderful nurses. (I felt to silly asking them all to pose for pictures, so I took pictures of the ones on the board - please excuse the reflections!)

Brenda is Scott's favorite and I'm sure Scott is her favorite. She says he's her "Buddy" and always takes Scott's side when we disagree about something. She is a Nursing Assistant.

Todd was our first nurse for Scott's very first inpatient treatment. He is a very nice guy.

Erdsley is the nighttime Charge Nurse (Nursing Supervisor). I've actually never met Erdsley, but Scott says he's really nice.

Cynthia is one of my favorites. She's always challenging Scott. She says she wanted to be different and NOT smile in her picture, but in actuality, she smiles a lot.

Marie is the Sweet Bearer of Caffeine! She has other duties, but in the afternoon, she brings a coffee cart by and knows my coffee order - 2 creamers and a half a Splenda. :) I think she has the kindest smile.

Maria and Scott have lots in common - they watch a lot of the same shows and she's a dog-lover, too.

Deinier is so sweet, too. She was with us the first two days this week. She's very attentive.

Tryphose is the daytime Charge Nurse. Yesterday, her and I were trying to convince Scott that Facebook IS the greatest thing since sliced bread, and that is more than acceptable to have text conversations instead of phone calls so that strangers don't have to listen to your conversations and you won't bug people if they are too busy to talk. (It didn't work)

"The Pole". The incessant beeping that emanates from "The Pole" can be VERY annoying, and I'm not allowed to figure out how to dismantle it and figure it out, so I just deal with it. Seriously, though, this is Scott's IV. The Chemo bag is always covered with a dark bag to block the light from having an any affect on the drugs. Scott is connected to this the entire week, including bathroom trips. When he gets unhooked, he does a little jig and sings I'm FREE, I'm FREE!! (Just kidding - but I know he wants to)

"The Board" is our daily status. Notice the section that says "My Most Important Priorities For Very Good Care Are:". He usually says "No Nausea", "No Pain" and ALWAYS says "Go Home".

Sorry guys - this is the very best Chemo Smile I could coax out of him, but he says "Hi!"

We hope everyone is having a great week - we'll check in later in the week. Love and hugs to all!

~Amy

Inpatient #3 Starts With Good News

Hi all! It's Amy, happy to deliver some good news. While Scott is not happy that another inpatient treatment has started again, he IS happy to have received some good news this morning. Before every treatment, we meet with his Doctor and/or PA and we discuss all kinds of things. Today, we were anxiously awaiting the results of Scott's first CT Scan since the original (He went on Friday). Today, we heard that that his tumor has shrunk AND there is new bone growth. We are still waiting more exact details, but apparently the tumor was bigger than we originally thought (about 2.5 inches) and it is now smaller. We had hoped and prayed and expected to hear the tumor has shrunk because his pain has decreased quite a bit, but we are very happy to have that confirmed. They still see the same two small spots on his lungs. They are too tiny to even tell what they are, but they will keep watching them as they were before.

He is going to go for an MRI next week, and then meet with his original Oncologist to discuss the results. Her, his Medical Oncologist, and other Doctors will review these results, his progress, and determine if they are going to recommend radiation, surgery or both. We'll let you guys know more when we know more.

So the boredom of the week has begun for Scott and we'll be happy when it's over. It is nice to see the nurses and aides we are getting to know well - there were "hi's!" all around when we got over to the hospital. They are such nice people - it makes this a little easier.

We'll check in throughout the week. Hope everyone has a good one!

~Amy

Fever's can be a bitch

Hey everyone.  Well, I'm home from the hospital.  Got home yesterday and was pretty tired.  I unfortunately couldn't go to a friends wedding last night, so I stayed home.  Really bummed about that since I was looking forward to Amy and I going.  She got a dress that she looks phenomenal in.  I probably couldn't have danced with her, but I really wanted to go.

Other than that, I stayed in, relaxed and rested.  I slept really good last night and for part of the day and am feeling better (not that I was really feeling "bad" when I had a fever).  The good news, no infections.  I think the type of fever is called a Neutropenic Fever.  This type of fever can happen when your cell counts are low after a chemo treatment.  This was true for me.  The immune booster shots I take weren't supposed to start until Friday, so my cell counts were low.  Now that I am taking the shots, my cell counts are going back up.

Well, tomorrow, I am going to try to go back to work (especially since I am scheduled to be back in the hospital a week from Monday for my next in-patient treatment), but I will be taking it as it comes.

I hope everyone had a nice weekend and I thank everyone for there thoughts and prayers.  I love you all and will post again soon with any updates.

A slight hiccup...

Hi all - It's Amy - I hope everyone is doing well.

We've had a slight "hiccup" with Scott's treatment and I always promise to keep everyone posted, so I wanted to do a quick post.

Overnight from Wednesday to Thursday, Scott came down with a fever. Many of you already know that a fever is a serious issue for patients undergoing chemo. The chemo kills everything in his body - both good and bad - and that means his immune system is very compromised. His body can't fight off infection like "healthy" people can. So, a fever has to be taken very seriously. He tried to see if it would go away on it's own (he didn't even wake me up to tell me) and continued to try to fight it throughout Thursday. Thursday afternoon, it continued to get higher, so off we went to the ER. The doctors at Coral Springs Medical Center decided it was best to admit him overnight, and have since decided to keep him overnight tonight, as well.

He feels fine, has energy and shows no obvious signs of infection or pneumonia, so that's all good. The doctors here are just being cautious and aggressive with the prevention and that's why he's going to be here. They are pumping him full of antibiotics and monitoring him. They've also sent some blood cultures to the lab, but those results will take several days. His fever is gone, but he has to go 24 hours without any fever and run the full course of antibiotics before they'll let him go home.

As you can imagine, he's not a happy camper - he's bored and more than slightly annoyed that he's back in the hospital, but he really is doing fine. So no cause for alarm - just keeping everyone posted. :)

Thanks for all the love, as always. We hope everyone has a great weekend!

~Amy

P.S. - Today's medical vocabulary lesson: "Afebrile" means without fever. Scott's Physician's Assistant (PA) used that term in an email to me like I had a clue what she was talking about! Of course, for those of you that know me well know I immediately Googled it. LOL - we're learning much more about medical terms, definitions and situations than I ever thought I would.

Treatment #5 Completed

Hey everybody.  Just wanted to let everyone know that I am doing ok.  My energy level has really gone down and I seem to be tired all of the time, but other than that, I feel pretty good.  Finished my 3rd out-patient treatment late Monday night.  We got out a little earlier than usual, not much, but I'll take what I can get.  I can't tell you how good it felt to take a shower and wash off all the hospital crud off of me.  Talk about feeling refreshed.  Felt so good afterwards.  Then I was able to sleep for about 8 hours or so which also greatly helped.  Especially since it was straight through.  It's a rare night for me to sleep all the way through without waking up at least once or twice.

I spoke with Liz, my PA and she told me that I have an appointment on Friday, May 20th to go back in for a CT Scan.  We were expecting this.  This is to see the how much the tumor has shrunk (if at all) from the Chemo.  I'm sure it has, since the pain isn't what it used to be.  I can now walk normally, but still tend to limp as it does hurt a bit.  I haven't needed any of the harder pain meds in a while and haven't even need any of the Excedrin (except for a headache from time to time).  So before I am admitted for my next treatment, we will go over the scans and have a better idea of where my treatments will go from here (surgery, radiation or both).

Hard to believe that I've had 5 ttreatments already.  Before I know it, I'll be passed the half-way mark.  And then be done sometime in October (if my body can handle the decreased time between chemo treatments).  I hope so.  I really would love to start the 2012 with a smile on my face and maybe some hair back on my head.

Almost finished with treatment #5

Hello all! I wanted to let everyone know we are almost done with treatment #5 and are ready to go home. We should be leaving by 11, which is an hour earlier than normal, so we're happy! We're both looking forward to getting some comfortable sleep. We'll check in more tomorrow - just letting all of Scott's Loyal Followers know he's ok. :)

Love to all!
Amy

Treatment #4 finished!

Hello all, It's Amy doing a post to let you know Scott's 4th treatment is done and he is home resting. He's still going to be trying to handle the 2-week cycle, so his next treatment is an outpatient one scheduled on the 9th. The week was a very long and boring one, but the nurses at the hospital just love him and they take such good care of him. He was very happy to be out of there by 4:30-ish on Saturday afternoon. The car ride wasn't as bad for him this time, as he made sure to take his anti-nausea meds about an hour before we left.

He's especially tired this time and is achy, but overall, he's fine. The nausea isn't too bad. He's going to be pretty quiet and resting for the next couple days, so you guys probably won't hear much from him, but I wanted to let you know not to worry. He starts getting the immune booster shots tomorrow, so I'm hoping that will help him feel a little better.

We hope everyone is doing well - talk to you guys soon!

4th Treatment - Almost Done

Hey everyone.  Well, it's Friday.  One more day till I fly the coup and get back home.  I can't wait.  It's been ok here.  The staff here is great.  And my room isn't bad (cable could be better though).  But I really wanna go home.

Been pretty tried since I got here.  Probably cause there is nothing for me to do.  I watch TV or my DVD player all day.  Not the most stimulating thing to do.  Amy and I did play chess yesterday, was a tie.  Don't think either one of us was really focusing on the game.  All of a sudden we look down at the board and we are both in check.  We made it a tie.

Been playing Backgammon at night with Dad.  Manage to win a game from time to time, but have a hard time focusing.

Other than that, things are pretty status quo.  The only new thing is that 2 week protocol seems to be working out.  I'm just hoping it stays this way.  I would love to be done in October.  Then I can do some traveling.  Our first 2 trips are already planned.  Charlotte to meet my Godson (Wade) and then Indianapolis to meet my nephews (Jeremy and Parker).

Hope everybody else is doing ok.  I'll post more once I get home.  Thanks everyone!!

Inpatient #2/Treatment #4 has started

Hi everyone! Amy here - I hope everyone is doing well.

Just checking in from the hospital as we start Scott's inpatient week. We'll be here Tuesday through Saturday this time, as the Doctor couldn't be here yesterday. Things are uneventful right now - Scott is napping and his pre-meds have started. We hope the whole week isuneventful. He'll be bored to tears, but in this situation, uneventful is good. It was so weird when we got here this morning - we knew exactly what to do and where we were going and the nurses on the floor recognized us. Sometimes, it crazy to realize how "routine" this has all become. We're anxious to see if the two week cycle works well - that could mean he'd be done with chemo as early as October. THAT makes him happy!

We started the week with amazing news, though - we are now an Uncle and Aunt to two amazing miracle nephews! Jeremy Issac (5lbs, 12oz) and Parker Alexander (5lbs, 4oz) Geller came into the world on Sunday. They are in NICU but are doing great and Deidra kept those two in until 34 weeks! They have had a long 12 weeks on hospital bed rest because the boys wanted to come out at 22 weeks, but they kept their eyes on the prize and life is good. :) The boys should get to come home in a couple weeks.

We can't wait for Scott to kick Cancer's butt and come see them, and our adorable Godson in Charlotte.

We'll keep everyone posted during the week. Thanks, as always, for your love and prayers - we are so grateful!

~Amy :)

No Title

Well, let me give everyone an update.  I'm doing ok, but I don't really know what to say.  Amy did a good job of an update of what's going on with my condition, so there's nothing new on that front.  And I feel ok.  Just run down and tired.  So i plan on getting to bed early tonight and getting a good night sleep.  Pleasant dreams everyone!!

3rd treatment complete

Hey everyone.  I'm doing ok.  Just tired and run-down.  I slept most of the day, but I did spend a couple hours working.  Everything else is doing good.  I promise that I will put up a full blog post tomorrow.  Just wanted to let everyone know I'm doing ok.

Checking in from Treatment 3

Hi all! Amy here - sorry we didn't get to update sooner. The "cubicle" we're in today is on a side of the building with seemingly no cell signal and i've been having computer issues. SO - onto what you want to know - Scott is doing pretty well (considering!). He didn't get that severe wave of nausea when they started the manual chemo like he did last time. He just had dinner, too. It's another long day - we hope to be leaving by 11pm this time. We had more nice nurses again today - they really do take good care of him here. We're hoping the nausea stays away for the rest of the night. He has a slight headache, but he's managing it.

Also, Scott has decided to go ahead and try doing the chemo treatments every two weeks, per his doctor's recommendation. Every two weeks is normal protocol for this type of cancer in kids, but there is very little data to support this in adults (remember, he's special!). For kids, chemo every two weeks has shown a slight improvement in survival rates, so that's all he needed to hear. It can be variable - we'll have to see how his blood counts look. So for now, we're scheduled for the next inpatient chemo on April 26th - 30th. He'll also be getting slightly different immune booster shots and we're going to try doing them ourselves - which means I get to administer them (insert evil laugh here! bwahahaha!)

Scott says hi to everyone and sends his love to all. He's going to post tomorrow while he's home recovering.

Thanks for your love and concern - we appreciate it more than you know!

~Amy

Night before my third treatment

Well, it's Sunday night.  Tomorrow morning, we head back down to Miami.  If I'm being truthful, it's really not bad.  Out of a 17 to 18 hour day at the Cancer Center, the part that truly sucks is a window of about 45 minutes to an hour.  After that (and before it), it's really just being hooked up to a hydration bag.  And then of course there is a lot peeing!!

Of course, the anxiety is back.  I now know what to expect, but I don't know how much of what I went through last time was the result of me making myself sick in anticipation of what was to come, or what because of the drugs.  I'm pleading with whatever may be out there to help me get through this, but after the hour or so of "pushers" begin complete (pushers = chemo in three syringes injected -vs- drip bag), I should be ok.  I'm going in prepared: DVD player, my book (of course), iPod, The West Wing and i'm having Dad bring his backgammon game to play (was fun when I learned last time I was in the hospital).

Well, I'm off to pack, have dinner and get to bed early.  I won't be posting tomorrow, but I will have Amy post an update.  Talk to you all soon.

Another day

Hey everybody.  I know I’m a day late for this, but hey, better late than never.  Well, I am back from the hospital and couldn’t be happier.  I’m home, not hooked up to an IV (it is so nice not to have to pee every 15/30 mins), have my dogs to play with and my house to roam around.

The time in the hospital really wasn’t too bad.  If all my in-patient treatments go like last week, I will be beyond thrilled.  Wasn’t nauseated at all (at least not until the ride home.  Even after 7 pm, you need to drive like a maniac to go from the Dolphin to get onto 95 and then to the turnpike.  Talk about a nauseous ride home!!), had an appetite, decent room and decent food.

Got some great news too.  On the first day, my oncologist told me that they were looking over the results from the bone marrow biopsy and found some troubling news.  They found that the chromosomal count was abnormal (very similar to the site of the tumor), which could suggest that the cancer had spread through my pelvis.  Most likely I would have to repeat the bone marrow biopsy after a couple more treatments to see where we stand.  I wanted to cry right there about the biopsy (not because of the cancer).  That had to be one of the most painful things I have ever experienced.  The news about the cancer having possibly spread wasn’t good.  But here comes the good news.  On the second day (I think), my doctor came in and said it was a mistake.  My chromosome count from the biopsy site was completely normal.  Talk about having your spirits go from the gutter to flying high!!

Other than that, not much to tell.  Today is another day.  Pretty nauseous at the moment, but it’ll pass.  The pain in my leg is still there, but it’s manageable.  Looking forward to the weekend to getting back to normal.  Hope you are all well and thank you again for all the prayers and well wishes.