This week's chemo is done

Hello all,

I wanted to let you know that Scott is done with the week's chemo and it went fine.  He had a transfusion today, so hopefully that will get his hemoglobin back up and help his energy level.

During the week, Scott also had a CT scan of his brain.  The results were normal, thankfully!  The reason he had to have it is because he's experiencing some numbness on the left side of his chin, lip, teeth and gums.  It's in a small area, but it was concerning to his Doctor because it could have been a sign of neurological problems as a result of a metastases to his brain.  They needed to rule that out so they can move on and try to determine the cause of the numbness.  He is also losing some of his motor control is his right index finger.  His Doctor thinks that could also be like his elbow - a result of having to put so much pressure on his arms and upper body to get up and walk with the walker.  We see his Doctor again on April 16th, where I'm sure we'll discuss how to determine what's causing the numbness, but if anything else comes up about that before then, I'll let you know.

Today is Scott and I's 4th Wedding Anniversary.  Happy Anniversary! This is the second anniversary that we've had to spend with him having chemo, but we will hopefully make up for it soon.

We're preparing for a difficult week of side effects, but hopefully after next weekend they will start to clear. After that, Scott should be up for visitors again. 

Oliver has been having some tummy troubles the past couple days and today I tried to give him some Pepto Bismol - I thought I'd share with you a picture of a very unhappy, pink-mouthed puppy after unsuccesfully getting him to swallow some.  (I couldn't help but to laugh!)

While I'm sharing pictures, I don't think I ever posted this wonderful pic of Scott and two of his nephews, Jeremy (left) and Parker (right).  It's such a cute picture, and a rare one lately - he doesn't like to have his picture taken. 

In fact, one of the only other times he's let me take his pic lately was when he got to meet his third nephew, Wade (this picture is from last July). I guess Nephews are special enough to break his rule. :) 

Have a happy weekend everybody.  As always, thank you so much for your prayers and positive thoughts.

With Love,
Amy

More chemo....

Hello all,

Just a quick post to let you know that Scott was cleared for chemo this week.  He also needs another transfusion, which will be at the end of the week.  His hemoglobin is a little low going in to the week of chemo.  It will get lower after chemo, so he's trying to stay on top of it.

Chemo has been going fine.  He was in Miami yesterday and is back and forth to Deerfield the rest of the week.  His Doctor has ordered more scans on April 13th to see if this chemo is able to slow down the growth of the cancer.  We'll have updates a few days afterwards.  For now, it's all about getting through chemo and the week of side effects afterwards.  He'll be taking a break from physical therapy these next two weeks, as well.

He had a pretty good weekend.  The pain wasn't as bad (it has unfortunately gotten bad again this week with all of the effort it takes to get to and from chemo), and he was able to have a couple visitors.  Hopefully he'll be up for visitors again in a couple weeks.

I'll do another post to let you guys know how the week went.

We send our love and hope everyone is doing well.
~Amy

Checking in

Hello everyone,

There's not too much happening since the last post, but I thought I'd do a quick post to check in.  In my last post, I said that the side effects seemed to be passing - it turns out he had another several days before truly getting through them.  It was a long week for him, but he is feeling better now.  He has had a complication with the incision on his abdomen.  It is is leaking seroma fluid, which is a clear fluid that sometimes leaks from incisions after abdominal and other surgeries.  It's not serious and it's not uncommon, but does need to be taken care of.  Cultures are negative for infection, but he has had to see the Doctor several times this week to re-bandage the incision and is on antibiotics as a precaution.  The other two incisions are healing well.

He started rigorous physical therapy this week, as well.  The first session was tremendously painful, but today's was easier on him.  It really seems to be helping his mobility (which is a really, really good thing).  He's loving his new La-Z-Boy recliner we ordered before he was admitted to the hospital.  It's quite cushy and he's very comfortable in it.  The hospital bed is fairly comfortable for him, too - what's not comfortable is getting IN to it.  Physical therapy should be helping with that, too. 

His counts look good and he's still scheduled to begin the next round of chemo on Monday the 26th.  We meet with his main doctor in the morning, and then he'll do Monday's chemo in Miami.  The other days of the week, he'll be able to go to Deerfield for the chemo, as it is a shorter duration then the marathon chemo days he has done in the past (different chemo drugs have different requirements for duration, pre meds, hydration, etc.)  He's happy to not have to be admitted for this protocol.  If the same pattern of side effects happens again after this round, the week after the chemo will be challenging as he deals with the side effects.  They have a "late onset" with this particular protocol.  While he's feeling better this weekend, he may try to catch up on some phone calls and may feel up to visitors for a short time. 

We still don't know if this chemo protocol is working, and we still won't know for at least another couple weeks yet.  After next week, when he's feeling up to, they'll probably do a MRI at that point.  There's a chance his doctor will recommend a third round before the scans - we just have to wait and see.

Scott is really remarkable - he's still being very strong and still fighting hard.  He is so determined to get through physical therapy and get some of his mobility back.  Even though I'm his wife, I still can't imagine how he feels and how he is processing all of what he's going through.  I know he's scared, but he's able to keep his head up and keep fighting.  It is so admirable!

He misses talking to and seeing everyone, but is grateful for everyone's understanding that visits and conversations take a great deal of energy.  It can be very hard for him to focus and concentrate.  I, too, am grateful for how wonderful you all are.  The offers for help are so appreciated and the prayers/love/positive thoughts do not go unnoticed. 

I'll post an update after chemo is started and we've had the Doctor's visit.  In the meantime, we're sending you all our love.  I wanted to leave you with a cute picture I took the afternoon Scott got home from the hospital.  It's bad quality, but its subject is adorable - this is Oliver laying on Scott.  Oddly enough, he's laying right on top of the pelvic tumor - it's like he's trying to heal his Daddy.  It's amazing that they seem to just know. 

~Scott and Amy

Acclimating to home

Hello all,

Scott is still trying to get acclimated to being home.  To my surprise, he was struggling a bit with leaving the hospital because it feels like a "safety net" for him - he knows that if something was wrong, help would be there quickly.  He was there a month - that's a long time.  I understand now how he was feeling - being home has taken some adjusting to.  The hospital bed we have at home isn't nearly as nice, and he has to physically do more for himself.  He also started experiencing the side effects of the chemo once he got home, so he hasn't been feeling that great.  Thankfully, those seem to be passing now.  Neil is working from our house during the day until I get home from work so someone is always there to take care of him.

He doesn't want any company right now - not until he feels a bit better after the chemo & the side effects are gone.  Once he feels better, I know he'll welcome the change of pace.

Physical therapy is finally starting today.  He has a full day between that and having to go to Deerfield for labs.  (At least it's not Miami!)   He still needs a lot of assistance moving around, so i'm hopefully about physical therapy helping him.

We went down to Miami to get his stitches out on Monday - the incisions are healing nicely.

Overall, the pump is doing it's job and the pain is down a bit.  It's not gone by any means, but it's progress.  He is still on some oral pain medicines and will be for awhile.  If he continues to see improvement in his pain from the pump, they'll look at decreasing the oral meds further. 

Right now, he's scheduled for his next round of chemo on the 26th.  We'll know more as that date nears, and will no for sure whether or not he can have chemo that day.  I'll do an update sometime next week so that you all know the status.

Take care,
Amy

Scan results and discharge

Hello all,

This blog post has good and bad news, so I'm going to get the bad news over with so we can all end this post on a positive note.

We received the results of Scott's CT scan from Tuesday, and the cancer has continued to spread while he was off of chemo.  To be very honest, I was braced for tough news - we knew there was a very good chance the cancer was progressing since he had to be off of chemo for so long.  I was not prepared to hear that it has now spread to his lungs and the lymph nodes in his chest.  There are also more tumors in his liver.  His Doctor says it may have been there for a long time, but only now are the spots big enough to see on the CT scan.  It does appear that radiation has stopped his pelvic tumor from growing any more, and the radiation is still "working" on killing the cancer cells in that area.  It was all devastating to hear, but Scott says he's not giving up and neither are we.  We're still swimming! 

He has now finished his chemo for the week and we have very high hopes for these drugs making a difference.  He will have more chemo in a couple weeks, and possibly a third week of chemo before doing more scans.  Then we'll see the affect this chemo has had.  If it is working, I believe he'll go through more, but we wont' know the plan until it's discussed at that time.  More radiation is not going to take place anytime soon - he cannot be off of chemo for that long, as he has to be off of chemo for several weeks in order to prepare for radiation, and then of course be off of it while undergoing the radiation.  Chemo is the primary focus, but between chemo weeks, his other focus will be physical therapy.  He has made lots of progress this week and is walking an average of three times a day.  Working with a Physical Therapist has been very good for him.  He calls her Nurse Ratched because she doesn't take any of his crap and makes him push through it.  I like her! :)   (I had to Google Nurse Ratched, by the way - I always thought it was Nurse Ratchet.  Yes - it's clear I've never seen One Flew Over the Cuckoo's Nest)

So - on to the happy news - Scott is coming HOME tomorrow!  Chemo is done and he's staying overnight to receive his immune booster shot in the morning.  He should be home in the afternoon.  I can't wait to bring him home!

He has tolerated the chemo very well with not really any side effects to speak of.  He says these drugs make him feel "off", but it's so hard to understand what medicine is making him feel what way - he's on a lot of meds.

We now have a hospital bed smack in the middle of our living room (and it does NOT match my decor!) but I'm grateful we have that so that he can be comfortable as he continues to rehabilitate.  Starting on Monday or Tuesday, a Physical Therapist will be coming out to the house three times a week to continue working with him.

Also, the incisions from the pain pump surgery are continuing to heal well and are less painful for him.  He gets the stitches out on Monday.  His Pain Mgmt Doc has continued to increase the medication in the pump while decreasing his oral/IV meds.  He will still be on some oral meds for awhile, but should be continuing to decrease the amounts/frequency.  The pain pump is working.

There won't be a whole lot to update you all on for the next couple weeks, but I will do another post soon just to check in. 

Just keep swimming!
Amy

Chemo is a go!

Hello everyone,

I'm happy to tell you guys that Scott started chemo again today!  This is great news.  I know it sounds so weird for us to be so excited about chemo, but it's so important that Scott has gotten to this point.  He's fought for over 3 weeks to be well enough to start chemo.  He has still has a lot he needs to get through, but chemo is an integral part of his battle and today is a major accomplishment. 

This is the chemo he was supposed to start on February 13th.  These are two new chemo drugs, since he was not responding to the last rounds of chemo.  These drugs are used in Ewing's Sarcoma patients when they get to this point and they have seen very good results with these drugs.  He is still in the hospital and will stay there through the next 5 days of chemo.  It's best that he's supervised and have easy access to Doctors and Nurses while he's going through it.

More positive news - the pain pump has started working.  Since Friday, he has been walking 2 - 3 times a day down the hallway on his floor.  He has been given a new goal today to start walking 4 times a day.  It takes a lot of effort, he still needs the walker and is still very painful for him, but just the fact that he can get out of bed and DO IT is very good progress.  He has been working with a Physical Therapist and will continue to do so for awhile.

It was so great to be with him this weekend and have lucid conversations with him.  We are seeing one of the major advantages of the pump in real life - he's still on a great deal of pain mediciation, but since it's delivered directly to his spine and not throughout his whole body, he's not so loopy and drugged up.  This weekend, he talked more than he has in weeks. His twitching has decreased a lot and he's not doing all those weird movements and acting out his dreams.  I can talk to my husband again - i'm so grateful for that.  I can hear more peacefullness in his voice and it is such a relief.

We're hoping he can come home after this week.  (I know I say that every week, but this time it feels so much more attainable).  Once he's home, he'll still need a lot of care, and will probably continue to do physical therapy at home.  After this week of chemo, there will be another week of chemo in another 2 or 3 weeks.  Then they'll do more tests and see what kind of response the chemo is having. There may be more chemo after that.  Hopefully soon we'll get to see how the radiation helped his pelvic tumor.  He is having a CT Scan tomorrow to "baseline" his liver tumors so they can measure the response of the chemo.

I also wanted to share with you all that today is Neil's birthday.  He is, of course, spending it at the hospital with his son.  When Neil and Holly came up to see him yesterday, Holly got a little cake and we sang to him.  I know the best gift possible for him is to see Scott come home.  He is relentless - he will never give up and gives Scott all the love in the world.  The staff at the hospital loves him and is always so impressed that he spends almost every day and night at the hospital with him.  To him, he doesn't understand it - to him, it's just "what you do" and he's never thought twice about it.  The dedication Neil has is amazing, and while it's obvious that Scott will always be grateful for it, I want him to know that I will, too.  Happy Birthday Dad - we will celebrate "for real" soon!

I've seen so many patients over the past year going through their battles alone. I'm sure that if someone is alone, most of the time it's not for people not wanting to be by their loved one's side - they may not be able to afford to take off of work or travel, but there are situations where people just flat out are not there for them.  I know I would never have to be alone if it were me either and my Dad would be by my side too, but it's amazing what we take for granted sometimes.  Take a moment and be grateful for your loved ones today.

One more thing from me and Scott - thank you to Cathy for spending the weekend running my life so I can be with Scott, and thank you to our neighbors for mowing our lawn and fixing our mailbox (which somehow became unattached to the pole!).  The kindness of people always amazes me and I'm grateful to all of you for kindess, too.

I'll do an update later in the week and let you know how chemo is going.  Keep those loving comments, prayers, and positive thoughts coming!

With Love,
Amy

Starting to feel a little better

Hello all.  Beware – very long post ahead.  J

Scott is feeling better today – he’s recovering very well from his surgery.  His incisions hurt, but that’s to be expected and should feel better in a few days.  He is starting to see a little pain relief from the pump and is able to move his leg in the bed a little bit.  They’ve had a compression stocking on his leg to help with the swelling. 

The Doctors are slowly decreasing the IV/Oral meds that he is on and will continue to even everything out over the next few days.  They are going to try to get him walking again today – even if it’s just a few steps.  I feel such a sense of relief that he got through surgery and we see a small amount of progress – any progress is good and we still have very high hopes that the pump ends up bringing a lot of relief.

He is still in the hospital and may be through next week, as well.  He’s still not mobile enough to come home and they still have to get his medicines adjusted to be able to be taken at home.  It’s been hard on all of us (Poor Neil is still there every day I’m at work and every night – he’s such a Trooper!) but as much as we want him to come home (and that is so so so so much!) we don’t’ want to rush things and him be uncomfortable.  Additionally, they really hope he can start chemotherapy on Monday.  Because that chemo will be hard on him (because of the side effects and because his body has been through so much in the past 3 weeks), keeping him in the hospital through those 5 days will allow them to constantly monitor him and help keep him comfortable.  I will keep you posted if chemo can start on Monday or not.  This remains the biggest goal after pain relief – we need to get back to treating the cancer systemically and address the tumors in his liver.  They are going to a scan before chemo starts so they have a baseline to measure the success of the chemo against.

He had his last radiation treatment yesterday.  They did have to sedate him again, but he’s done with those now and we’ll know more in a couple weeks about the effect that it had on the pelvic tumor. 

I wanted to share with you all more information about the pump and how it works.  Surgery ended up being a full 6 hours on Wednesday – 3 hours for the actual surgery, 2 hours of prep and 1 hour of recovery before we could see him.  (Those were some of the longest 6 hours of my life, but Neil and I got through it together).  The surgery took awhile because you don’t want to rush threading a catheter through one’s spine.  The pump itself was inserted into his abdomen, about an inch underneath his skin.  It looks like a tuna can (not kidding).  We probably won’t be able to see it under his skin, but on super skinny people, supposedly you can. 

He has three incisions – one in his abdomen from the pump, one on his side to assist them with threading the catheter, and one in his lower back for the same reason.  They are relatively small – the abdomen is the biggest one.  The pump is the 40ml (larger) one and is filled with Dilaudid, since he seems to respond well to that drug.  It constantly delivers medicine directly into the spine in the amount of .5mg Dilaudid per day (to start).  He gets 4 extra infusions each day (every 6 hours) to help with breakthrough pain (I call them “freebies”).  To get these extra infusions, he uses a remote.  He puts it on his skin right over the pump in his abdomen, pushes a couple buttons and waits for the beep.  It sounds so crazy, but that’s really how it works!  If he tries to do these before it’s time, the device will record the attempt, but not let him. 

When he gets an MRI or other magnetic scans, the device is setup to stop when the magnet is detected and will restart after it’s done.  The pump batteries can last for 4 – 7 years.  He will hear beeping when they get low, or if there any problems with memory, the device being empty, etc.  When its batteries are out, a new pump is inserted.  Obviously, we hope Scott won’t need it for anywhere near that long, but many people live with pumps many many years. 

It was pretty interesting to us that the reps from Medtronic (the company that makes this pump) were there to assist and oversee the insertion of the device during surgery.  We met them and they were the ones who told us how the remote and pump work.

The pump started delivering the medicine to his spine approximately a ½ hour after they turned it on.  He will have to go back periodically to get the pump refilled.  It will likely be around every couple months.  We he goes in, they access the pump in his abdomen via a needle and drain any excess medicine.  They then refill it with a needle, as well.

More about life with the pump can be found here: http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/what-is-it/index.htm

He got this pump (Medtronic Synchromed II):  http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/synchromed-ii/index.htm

And the remote device (Personal Therapy Manager:  http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/our-drug-pumps-for-pain/personal-therapy-manager/index.htm

If you have any questions, feel free to let me know and I’ll try to answer them.

I hope you all have a good weekend!  I’ll be at the hospital all weekend again and will send another update Monday night to let you know what happens with chemo and how he’s feeling.

Love,

Amy

Surgery went well!

Hi all,

I'm sorry this isn't going to be very in-depth - it's been a long day.  Long story short - Scott did great today.  He is still in recovery - he will be spending the night there so he can receive immediate assistance (if needed) and be observed constantly - that's routine. No guests can stay overnight in recovery, so both Neil and I are home for the night.  I will email more details about the surgery, how the pump works, etc. tomorrow. Also - plans are still on for radiation tomorrow, but he will need to be sedated again beforehand.

Goodnight,
Amy