Recovery Day 5

Alan walked 7 times yesterday for a total of 1200 ft, but his body was not ready for any more tube removal. When you think of all his body went through, it's truly amazing he is walking! Let alone already lost some tubes!

Last night's nurse was wonderful! This is a huge praise since I left before meeting her. He did have some NG Tube issues during the night that the nurse couldn't get corrected. However, she was engaged and tried everything she could and then she called in the doctor to resolve it. 

While waiting on the NG Tube to be resolved, Alan walked two laps in the middle of the night. Never one to just sit around!

Nurse L this morning seems good! Amy is with him most of the day. She said he is very tired from last night but in good spirits. He already walked 2 laps again this morning. So before 8, he's two walks and 600 ft down! Way to go, SuperAlan!

While being apart from him is hard, I knew I was where I was suppose to be last night when Rebekah saw her Fathead in the stands during the performance! It was such a joy to see the whole show for the first time! And they killed it! It was also nice to see so many students stay and watch the band! These kids work so hard. Two weeks til BOA Super Regional and State! Pray that the girls enjoy every moment of this time together in band!

- Mel

Recovery Day 4

 Alan got a better night's sleep than he has since getting here! Huge praise. He did not walk again after I left because he knew he needed to rest!

Sadly he hadn't had much assistance from the new day nurse. So when I got here just before 8, I waited to see what this new nurse was like. 

When the comment about something he said to her came up a couple minutes later and the response was, I'm sorry I hadn't been paying attention, I was done! So I go into Alan Lawyer mode. So Nurse J, how long have you been at MDA? Since Feb. And how long have you been a nurse? Since Feb. 

Alan emphasized again how he wanted to get up and walk. She said she had two more patients to do meds for and would be back. I asked if Caleb (friend of Matthew) who was also helpful yesterday could help. She said he is on other things today and said she would be back at 9:30, that was over an hour away. 

Nope, nope, nope. So I went looking for the Leader Nurse Alice who assisted Matthew with getting some things he needed yesterday. I couldn't find her but happened across the floor manager, Dan. He listened to my issues and immediately jumped into action. 

Alice came and assisted me in getting him out of bed and then he walked the hallway (not around the pod) which is 50 Ft longer.  Then he sat for a bit before walking again!

Dr. Wise One and Dr. Bubbly came by. They were in great moods and gave us great news! He is now doing a gravity test on the NG Tube! If by 3 he passes it, they will remove the NG Tube! This would be massive! Also they said he was good enough to not have to wait on the nurses to walk!!

So we've done 4 walks of 800 total feet already today since I am able to help him with all the tubes! So proud of his drive. The four teams of docs that check on him daily emphasize how important 2 things are: walking and breathing exercises!

If you know Alan, you know how fixated he can get on a mission. Well the boy wants the NG Tube out! The quickest way to accomplish that is walking. So he is hyper focused on walking!

Please cover Alan and I as I have Homecoming duties with the girls from 7 tonight until 10ish Sunday! Others will help him and be the bulldog for him if needed, like I was today. Being apart may be the hardest phase as I am able to anticipate his needs. Also I am nervous what nursing staff will be like over the weekend. Without me here, esp. Pray that I can be fully present with the girls for this major event. Pray for Alan's heart with not being able to be there for Homecoming!

- Mel

Progress and Regress

Today at MD Anderson was a good day. Spoke with his patient advocate about a few issues (night nurse and clergy visits) and it was super productive.

Alan continues to make progress. But considering what his body has been through any steps forward are progress. He is obviously not getting better overnight. And I think he's accepted that. 

Hell was his descriptive word of choice for how he is today. And I can think of no better description. His body has been cut into pieces on the inside, put back together (kinda) and then scraped, scalded with hot chemo and shook for 90 min while they tried to get the chemo to go everywhere. Then he was stitched back up. 

His body is obviously distressed. His fatigue is insane! You try having chemo inside your abdomen! His drive is intact, but while his spirit says go, go, go, sometimes it is all he can do to grunt. His body, mind and spirit are not currently in sync.

I don't know that I have the fortitude to do this procedure. My husband is BAD ASS! Sorry but that he is willing to try this Hail Mary play to live longer to be here with the girls and I is like Next Level Warrior! He is stronger than all y'all! No offense!

Today his goal from the team was 3-5 times walking. He had walked 5 times when I left for a total of 7 laps. He planned to walk once more after I left for 2 more laps to "beat yesterday." So I will let you know in the morning if he met his personal goal!

He also had a couple of new or advancing side effects! His swelling has continued to increase, but this will hopefully subside some in the coming days but could be a problem for several weeks. Chemo sucks! Also, he has developed a couple of blisters that we are watching and trying to treat with care to avoid having bedsores develop. It's not like the boy can stand around all day, YET!

Praise, our nurse, Matthew, was an incredible help to Alan and I.  Having a male nurse to help a male patient with things he doesn't really even want his wife's help with was AWESOME. Matthew truly lived up to his name (gift of God) with his assistance, encouragement and conversations. Plus I loved his Jehovah Rapha and Philippines 4:4-6 tattoos!

Wednesday and Today I have been getting out of the house before or as the girls leave and getting home around 8:30 to 8:45. Tuesday and yesterday I crashed pretty hard and very fast. Tonight, the girls waited to eat with me, but sadly things did not go well. Fear mixed with stress of Homecoming Week has one daughter really struggling. And the other daughter struggling not to co-parent. This is 6 years of tough crap. And that's a lot for me to deal with. Now try being a TEENAGE girl! Yeah... this is not for the faint of heart as a kid or as a parent of a kid. 

There are scars from the last six years that I didn't reference in my I Hate Cancer post from last night. The things I could write about the impacts this has had on each girl could fill more blog posts than anyone would read! 17 and 14 is tough, period. 12th and 9th grades are tough, period. Dealing with cancer since 8 and 11 is tough, period. Add all that together and again I'll use Alan's word for today, it's Hell.

So tonight I covet your prayers. I am not going to give a list because it would take too long to get it all! So my cliff notes version: that we have Matthew again tomorrow, Audrey, Rebekah, Alan, Me. 

Thanks again for walking through the realness with us! I'm grateful that we have HOPE in Christ or else I don't know why any one of us would choose to still battle on. 

- Mel

Recovery Day 3

Last night was so much better! Praise the Lord! First I didn't leave until I met the night nurse and as the Lord would have it, his night nurse was Sonny. She was his nurse Monday night when he got to the TPACU. She was so apologetic that he had such a horrible experience the previous night. 

He had a better day yesterday than Tuesday which was awesome! We had expected some setbacks. But instead he ended up doing 6 walks of 8 total laps. A lap is 150 ft. So 1200 ft yesterday. He also asked if he could not have the blood pressure cuff at night. Dr. F agreed his vitals had been fabulously stable! So they downgraded his monitoring to that of a regular floor patient! Which meant if a room became available on a regular floor, he could be moved! Sonny promised me if he was moved she would ensure the new night nurse would take good care of him. And he did get moved!

The other advantage to being on regular monitoring, he got his arterial line, heart monitor, blood pressure cuff and pulse ox removed. 4 less cords to contend with every time he moves! Plus a 3rd IV line was taken out earlier in the day! So now instead 3 IV lines, there's only 1! And instead of 13 different lines coming out of his body, he's down to 8! We are hoping 1 or 2 more go today!

So goals for today:

• 3 to 5 walks
• 3 to 5 sitting in a chair
• A shower!!!
• Continued Pain Management
• Continued increase in alertness
• Good day and night nurses! Day have been fabulous. Last night's nurse didn't know what one of his tubes even was! 

Thank you all for caring and your continued prayers and support. This has been a lot harder on him that he anticipated. 

- Mel

I HATE Cancer

I'm currently sitting in our bed alone crying. No not just crying. Bawling. 

Please know that I don't regret the choice I made last night to go to the band thing or the choice I made tonight to not go to the Homecoming Parade, Pep Rally and Senior Band Parent Skit. I refuse to regret. But I do still mourn the choices I must make. 

Cancer has taken so much from my family for so long now. And I hate it. My girls have missed out on the normalcy of life for 6 years. I hate how they have each lost friends because they cope with things differently than others and that isn't always compatible. I hate that some school assignments are triggers for them. I HATE that they worry about their dad dying. 

I hate cancer so much that as I get pictures sent to me of my girls having fun at their ONLY Homecoming together, as I watch the video of the senior parent skit we should have been in, I can't stop the tears from falling. I hate it so much. Like major curse words hate it. Like punched in the gut hate. I'm tired of having things taken from my family because of this horrible, awful disease. 

I hate watching my husband struggle to stay awake. I hate watching him plod slowly around the TPACU when he was running 5 miles just a week ago. I hate seeing the effects this surgery is currently having on his body, his spirits, and his energy. I $/):&;&/(:);&:):&:):(/&- HATE cancer. 

So while I hate something with a passion so deep in my core that could make me bitter in no time flat, I have learned I have to find the positives. It's why I keep doing daily positivity posts. To keep my focus on God's goodness to keep from growing bitter about all the things cancer has taken from us. So to the bitter, small people in the political world that have mocked me for my positive posts, Kiss Off! Because I will continue to find positive no matter what because I refuse to become bitter!

Tonight my positive is my husband is HERE enduring the HELL that is the recovery from this surgery BUT he is here. And every day I have with him is joyous! Because there is no better man here on earth. This man is a warrior unlike any other! He walked 5 times today with a total of 7 laps! He walked 1050 ft, less than 48 hours postop! He is killing it. Because he is determined to not let cancer OR the treatments of cancer kill him! That is a warrior! 

To my incredible friends in their own cancer battles or with a spouse, child, parent, or friend that have battled or are battling, YOU are all warriors! Fighting is what makes us warriors, not victory or defeat! Fighting. Sometimes for that next step, that next treatment, that next battle, or that next breath after our warriors are gone. We keep fighting, determined to find the positive, determined to find God's goodness in the midst of our living hell. 

To all of you warriors, I see you, I pray for you! Battle On!

-Mel

Recovery Day 2 Morning Update

"I missed you. So glad you are here."

"How was last night?"

"My night nurse was awful. I didn't get any sleep."

"Were you in the chair all night?"

"Yes she never offered to get me into the bed."

*****

So that's how my wife guilt is going right now. I am not leaving until after shift change tonight and I speak with the night nurse. IF I leave. 

Now for the good news. PT came just after I got here this morning. They got him up quickly and he went on a FULL lap around the TPACU. 

Goals for today:

• 3 more times of 1 lap
• 1 time of 2 laps

The anesthesia is now out of his system so he's starting to feel the pain more. They are giving him a lidocaine patch for local numbing on his abdomen. They are bumping the epidural up by a 1/4th so he still isn't back to yesterday's level. But it is more to combat the anesthesia going away. 

Prayer Requests:

• That I don't flip out on the charge nurse about last night. 
• Pain management
• Continued progress
• Rest
• That the girls and I stay healthy with the cool front and activities. 
• Wisdom for today's team

Thank you for walking this road with us. 

- Mel

Recovery Day 1 Evening Update

Tonight was UIL Region band competition for our girls and TWHS Band. I am so grateful to our band framily for their support of the girls, Alan and I! Tonight for competition some other framily joined to love on the girls. Thank you ladies for coming and watching with me. 

Always thinking of others, true to his core, Alan insisted that cancer would not take anything else from our girls and that I would still attend every competition. So tonight I left him, watched the best HS Band on the planet and came home to actually sleep. 

Dr. Wise One came by and said he isn't surprised at the small struggles Alan has had today. He said he expects tomorrow to be similar if not worse. Coming off of the anesthesia and with the epidural, Alan's blood pressure plagued us for most of the day. He was running low already and then when he would stand to try to walk, it would bottom  out and cause lightheaded was making it impossible to stay standing or to walk. 

After multiple attempts, they tried tapering back some on the epidural, reducing it by a third. This did in fact help enough that Alan was able to have two small walks this afternoon. He is in no way ready to run a marathon but I am sure in no time, he will be! His attitude has continued to be awesome. 

The other side effect of the anesthesia and pain meds (not to mention having gone through such MASSIVE surgery) is that his body is exhausted. Conversations of any length take a toll on him. He struggled today to keep his eyes open during interactions even as short as 5 minutes. This too got a little better with the reduced epidural meds. 

So right now we are figuring out that fine line on how to keep his pain reduced and to stay awake to do the things he needs to in order to get better and break out of MDA eventually. 

He did do super well with his breathing exercises! He also sat in the chair all day! Super job and stood roughly every two hours to either try to walk or to walk! So he met 3 of the 5 goals for the day! Tomorrow we will be shooting for the same goals.

I will update in the morning if anything overnight to note. Otherwise I may just update at the end of the day. 

Thank you all for the texts and calls. Please understand if I don't respond right away, I will eventually. Alan may not be up to communication with the outside world until Friday. We will just have to see! We take things day by day and based on how he feels at the moment.

- Mel