Thursday, June 21, 2012

What's Next?

So, we have been home from the hospital about 10 days now.  Steve is healing well from the surgery (to remove the adrenal gland and tumor).  For the most part, his pain is under control.  Unfortunately, Steve, Sadie and I all caught a cold/upper respiratory infection.  This hasn't helped in the pain department for Steve.  If not for the coughing, he would probably be completely off of the pain medication already.  Steve had a follow up appointment with his melanoma specialist, Dr. Kim today.  The point of the appointment was to find out "where do we go from here?" Dr. Kim thinks with the large tumor out of Steve's body that we have a little time and things are not as urgent as they were. Dr. Kim would like Steve to come back in 1 month and repeat his CAT scans.  Depending on the results of the scans will determine what the next course of action will be.  If the only spots are still the 1 lymph node and small spot in the lung and those spots have not changed, then it is possible that Steve will go untreated and get new scans every 2-3 months.  It is also possible that he would have another surgery to remove the lymph node.  If the scans show any growth, or any new areas, then we would proceed with either a clinical trial or one of the newer approved drugs (Yervoy, Zelboraf).  So, we are still in the land of unknown for now.  For the next month Steve will continue to recover from the surgery and we will just live a "normal" life.  Melanoma is a very scary and quickly spreading type of cancer.  However, Dr. Kim seems confident that for now it is under control.  So, in the meantime I will get back on our "cancer" diet, juicing, supplements, etc.  I don't feel comfortable just sitting and doing nothing at all.  At the very least I will have to pump Steve full of cancer fighting supplements!

Thanks for everything, everyone!  I will keep everyone posted when we know more.

Saturday, June 9, 2012

Surgery Day 4-5

Overall the last couple of days went pretty well.  On Thursday night in the middle of the night (around 3am), Steve randomly threw up.  He didnt have anything in him, so it was a whole lot of dry heaving.  That caused him a lot of pain and he was unable to go right back to sleep.  During that time he mentioned that his back was hurting also.  I looked at his back and he had a huge egg shaped, swollen area where his epidural was.  We showed the nurse and she called the pain team in and they said that they would watch it.  So, over the last couple of days it has went down and we are hoping it will keep going down so they dont have to go in and drain it.

Steve was laughing at something on TV and was trying so hard to laugh that it was making him (and me!!) laugh even harder!!!

Friday, Steve continued to do his laps around the nurses station.  We also attempted our "date night" on the 24th floor observation deck.  When we got there it was closed though.  Bummer!  Oh well,we got a good walk out of it.  Steve had his catheter removed on Friday. The doctor said that he would start him on a regular diet on Saturday.  We had a really horrible night of sleep Friday night.  Literally every hour someone was in for something.  It was so very annoying.  I can't wait to get home and sleep in my bed and sleep through the night!!
Heading up to the observation deck on the 24th floor

Bummed that the deck was already closed. 

This morning (Saturday), Steve started his regular diet.  He has to start slow considering he had major surgery and he hasnt had any solid food since Sunday night....SIX DAYS of no food!  Craziness!  He had a couple bites of a dry pancake and a couple of bites of yogurt and some green tea.  For lunch he had some chicken noodle soup and a couple of bites of tapioca pudding and green tea.  And for dinner he had hummus, a roll and a couple of bites of mashed potatoes and gravy and some green tea.  He tolerated the food well and hasn't had any more nausea or vomiting episodes.  This afternoon they switched him from IV meds to pain pills.  This is the first step in getting home.  He can't go home with an IV!  So, now he is not connected to any IV's, fluids, etc.  He got his first dose of pain pills around 4:00 pm.  He did well on those for pain, but he also still had some of the IV meds in him.  At 8:00 it was time for the pain pills again.  We walked to the observation deck for "date night" and he was in a lot of pain.  He broke out in a sweat and started turning pale he was in so much pain.  He still has an IV in (it's just not connected to anything) in case the pills weren't enough they could give him some extra meds through the IV.  He didnt want to get any extra meds through the IV because he is ready to go home and was afraid that this would hold him back.  The nurse walked in and could see the pain he was in.  I told her why he didn't want the IV meds and she assured him that getting some extra doses of pain meds through the IV during the transition period would not hold him back.  So, he got the extra dose in the IV and is now feeling much better.  For a little TMI-he also had a bowel movement today.  That is another big "goal" before you can get home.  Apparently everything inside kind of "goes to sleep" during surgery and they have to make sure everything "wakes up" before you can go home.  When we saw the doctor this afternoon he said that we could possibly go home tomorrow evening and if not, then most likely for sure on Monday.

Daytime view of the observation deck 

Daytime view from the observation deck 

Steve walking to the observation poles and IVs!!

Our self portrait at the observation deck 

Beautiful nighttime view of Houston from the observation deck at MD Anderson

<3 Us <3 

Thursday, June 7, 2012

Surgery - Day 3

Not too much to report today.  Good news though, right?  Steve and I both slept through the night.  I even slept through the doctors round (again).  Steve's pain is now well managed and is overall getting less intense too.  The doctor asked him to do at least 5 laps around the nurses station today.  He ended up doing 7 total.  One lap the first time and then two other times he did three laps.  Tomorrow if he is up to it we are going to have a "date night".  We are going to walk to the newer tower of the building.  On the 24th floor there is an observatory deck and you can see all of Houston lit up at night.  Everyone that's been says how beautiful it is at night.  So, if he is up to it, it's date Friday night date night at MD Anderson :)

Steve is still on a liquid diet. Today he had part of a popsicle, part of a nutritional drink, some jello and lots of ice chips.  The doctor will probably put him on a regular diet tomorrow although at this time Steve has no real desire to eat anyhow.  Steve came in weighing 240 pounds and is now 260 pounds.  He is getting lots of fluids pumped into him, so the doctor seems ok with that amount of water retention.  It should all come off quickly once the fluids are stopped.  There really is no "news", Steve is just laying around healing and getting better.  Just from the improvement he has made in the last 2 days, I really think he is going to make a quick recovery from this surgery.  I'm not going to let him over-do it at home, but I think it is going to go better than we had anticipated. We will see....

This afternoon, Lucy from the communications department stopped in to talk with us.  She had contacted me last month about collaborating with MD Anderson on some of my blog posts.  We discussed that and several other posts she is interested in me writing for their social media outlets (that could include their blog page Cancerwise, Facebook, Twitter, Pinterest, You Tube, magazines, etc).  Lucy is stopping back by tomorrow to pick up HIPPA release, and media release forms.  She was super sweet and I can't wait to work with her on some different things.

Miss my silly Sadie Rae....

Missing Princess Bully too!!

Wednesday, June 6, 2012

Day 2

Steve had a really rough night last night.  He was in a lot of pain.  Late last night they were able to get him somewhat comfortable, but by the middle of the night he started having a lot of pain again.  Stuart (Steve's brother) came by @5:00 am on his way out to head back to Mississippi.  He stayed a couple of hours.  I was still sleeping, but during that 2 hours, Steve went from uncomfortable to excruciating pain again. The doctor made his rounds and then we got the anesthesiologist back to the room again. The problem with Steve's pain is that the main source for numbing his incision area is supposed to be the epidural.  Because they attempted the epidural 5 times and actually ended up having to put it in through the side instead of straight on, it just isn't all of the way in properly.  The catheter is only partly in and therefore only part of the dosage is getting in.  The anesthesiologist (Luke Walker) ordered a stronger medicine for Steve's epidural since the epidural is leaking and probably only about 25% of the medicine is actually making it in.  So, he is getting the bit of medicine from the epidural, pain medication through an IV, Toradol every 6 hours and Robaxin, which is a muscle relaxer every 8 hours.  This combo has kept him fairly comfortable all day.  He was actually able to get out of the bed (with help) and sit up in the chair for about an hour.  While he was sitting up he got nauseous and had a vomiting spell.  He hasn't had anything to eat for 3 days, so there was a bunch of it, but not much to it.  He got back in bed and has been pretty relaxed most of the evening.  The nurse just came in and told us that he will be getting moved to another room tonight.  This room is an ICU type room and meant for usually a 1 night stay the day after a major surgery.  But, since there was not a room available on the floor that he needs to go to, we were going to stay in this room an extra night.  But since a room opened up, they will go ahead and move us in about an hour.

Prayer blanket given to Steven by Cheryl Oller

Dried Sage bundle for Steve from our friends, Steven and Cheris Kotalik.  They recently took a vacation to New Mexico and Sage is supposed to be kept out in your home for healing.  It is a very pretty bundle!

Tuesday, June 5, 2012

Surgery Day

What a day. What a day.  I got up this morning and took Ashlynn to daycare.  I got back home around 8 and my phone was ringing.  It was MD Anderson asking if we could come earlier than 10:30.  I had not yet packed our stuff because I figured I would have time to do it in the morning.  I threw our stuff together (of course Ive already remembered several things I have forgotten) and we made it here by 10:00 and he was being wheeled back into surgery by 10:45.
Arriving for surgery 

Very irritated because he has not eaten in 2 days and he is tired.....just ready to get started!!

Compression socks to prevent blood clots 


Fixing to be wheeled away

Steve's brother, Stuart is in town from Mississippi.  Stuart, me and my mom waited together for the surgeon to come give us the news.  The surgeon came out about 2:45.  He said, "why don't we go find a big room".  I panicked for a quick second and then realized he probably can't sit and talk about Steve's surgery out in the open even if he wanted to.  He must have sensed that that statement concerned us because he then turned around and said "he is fine".  Anyhow, we got to the consultation room to speak with the surgeon, Dr. Lee.  Dr. Lee said the surgery went well, but ended up being much more invasive than they originally planned for it to be. The tumor they removed (along with the adrenal gland) was the size of a softball. What made the surgery more invasive than originally planned was the fact that from the CAT scans there is no way to tell if the tumor is actually attached to other organs or touching other organs.  Well, Steve had to go and do it BIG.  His tumor was attached to his liver, kidney, AND the scariest of all the vena cava.  So, since the tumor was attached basically everywhere, they had to take the surgery very slow.  They slowly removed the tumor from the liver and kidney and then had to be extremely careful cutting the tumor from the vena cava.  He had to have EIGHT blood transfusions during the surgery!! The surgeon said that most of the tumor appeared to be dead, but it will be sent off to the pathology for a full report.  When we asked if they were able to remove it all in one piece or had to remove it in pieces, they said that they were able to remove it all in one piece but the tumor did rupture spilling "hopefully" dead tumor cells into the cavity.  They were able to suction this up and "hopefully" this will not be a problem.  He said with a tumor of this size there was basically no way to remove it without rupturing it or removing it in pieces.  So, we will take what we can get.  He did also say that he saw no evidence of melanoma (or any other type of cancer) anywhere else in the area he was in.  So, that was great news!

Ever wonder what the different colored ribbons stand for?

Mom made me laugh.  We were browsing the gift shop and she said she "would" buy me this card but I was with her, so I could just read it and take a picture :)  Love you, Mommy!

We were originally told it would be 1-2 hours while Steve was in the recovery room and then we would be able to go back and see him.  That 1-2 hours turned into about 4 hours. They could not get Steve's pain under control.  The decision was made prior to surgery to administer pain meds and numb him through an epidural.  Doing the epidural versus pain meds through an IV reduce side effects such as nausea and vomiting.  When you have your belly sliced all up, the last thing you want to do is vomit!  After FIVE attempts, they finally got the epidural working properly and Stuart and I were able to go back.  (By this time, mom had to leave to pick up the kiddos).

Our first post-op look at Steve - no pain!!

Happy to have a pain med button!

A look at the incision

A close up of the incision

Steve and Stuart 

Me and Steve <3 

We visited with Steve and he was in good spirits.  He was laughing, joking, showing us his incision, etc.  Stuart left around 7-7:30 and shortly after that Steve started having pain.  It went from a 4 to an 8 quickly.  If the epidural was working properly, this should not be happening.  I let the nurse know and she called anesthesia.  Before anesthesia made it to the recovery room, Steve got transferred to an overnight recovery room that is basically more like an ICU room.  By the time he got to the room, the pain had escalated from an 8 to a 10.  Anesthesia finally got to the room and assessed the epidural.  It was again leaking and not working properly, so he finally gave up on the epidural and is getting IV pain meds through a self administered pain pump.  Unfortunately, he suffered at about a level 13 on the 1-10 pain scale for a good hour to hour and a half.  He is still having some pain, but it is coming in waves and not quite as bad as it was.  I am hoping he gets some rest tonight, but so far it doesn't look like it.  Between alarms (his blood pressure keeps getting really low), nurses coming in, the pain, the narcotics, etc, he is just not able to get to sleep.

Monday, June 4, 2012

Tomorrow is the BIG day!

Tomorrow Steve has to be at MD Anderson at 10:30 for his surgery.  He will be having surgery to remove his right adrenal gland (and the grapefruit size tumor that is on it).  This is a major surgery.  They will be making an incision from right under his sternum all the way down towards his belly and then it will curve into a U shape towards his back.  They will have to remove his intestines and sit them to the side while they work on the adrenal gland removal.  The adrenal gland sits on top of the kidney, the vena cava (the large vein that carries de-oxygenated blood from the lower half of the body to into the right atrium of the heart) is very close by; therefore, making this a very major surgery.  Here is a good diagram

Poor Steve has been on a clear liquid diet all day, has to take a drink to "cleanse his colon" and then can not eat or drink after midnight!  Uggg, I feel so bad for him.  I know he has got to be starving now, not to mention how he is going to feel tomorrow morning not being able to have ANYTHING.  Oh well, I guess that should be the least thing I am worried about!  I just can't help but to feel so bad for him!

We were told the surgery should take between 2-3 hours.  He will then be admitted and be in the hospital about 5 days.  He will have an epidural after the surgery (or maybe before?) to be able to get pain meds.  Pain meds that are given through an epidural have less side effects than those given through an nausea and vomiting.  You don't really want to be vomiting with an 8-10 inch cut down your belly!   Here is a picture of what the cut will be similar to.

It should take 4-6 weeks for Steve to completely recover from the surgery, although every day he will be less and less sore.  They said after about 10 days he should be able to sit comfortably with minimal pain (with pain meds).  So, we shall see.

In speaking with the surgeon and the PA today, they both said that Steve had a "strange case of stage IV Melanoma".  I kinda like the sounds of that.  "Typical" cases of Stage IV Melanoma are not good.  The surgeon couldn't even find the original lymph node that was swollen the size of a golf ball (or bigger).  He finally found it after much digging but admitted that if he didn't know he was digging for it he would have never felt it and would have overlooked it.  So, the lymph node has shrank SIGNIFICANTLY!  The spot on the lung, both the surgeon and PA both stated they are not 100% convinced that the it is even melanoma.  I let them know that Steve had pleurisy (inflammation of the lining of the lung) last year for several months, had swine flu, and a couple of spells of bronchitis.  So, in fact the 8 mm spot on his lung could actually indeed be scar tissue or something else.  The only way we will ever know is a biopsy, and we may do that someday.  After Steve heals from this surgery and is on his next treatment for a while, if everything is going well, they may actually even do another surgery to remove the lymph nodes on the right side of his body.

Things are looking good for now, we just have to keep our fingers crossed for a smooth surgery tomorrow! I will update again after surgery and once we get settled into a room.

Thanks again to everyone for your love and support!


P.S.  Here are a few photos from the last month.  I didn't update the blog over the last month but thought I would share a few pictures from that time.

Family game night with Sadie 

Free dessert at Chili's - YUM!

Daddy napping while Ashlynn plays on the Ipad 

Daddy and his girls at Rainforest Cafe 

Steve and I this past weekend before our night out gambling!