What if...

I don't often ponder what they would be like if cancer had never entered the picture. I don't think on how different our lives would be if cancer had never come. 

Today I was struck by the videos and pictures of 6 years ago at Santa's Wonderland with the girls. They were younger, yes, but there was a freedom in them. There was no fear in their faces. But just a month later, there was terror. Seeing their daddy unable to stand fully upright and then all that has come since, it does something to a kid. 

Heck, it does something to me!

Someone once mentioned how something had changed in the last few years and how they wish it was still the same. I thought to myself then, yeah I know I have changed a lot in the last 6 years. Walking this journey alters you from the inside out. Or maybe the outside in. 

I'm sure I would have less grey hair! Thank you Lord for hair dye! And I sure would love to have the 6 figures we have spent out of pocket on medical expenses in that time back! 

But seriously, nothing in our lives is remotely the same as that evening at Santa's Wonderland 6 years ago. Every single aspect of our lives is altered - impacted by cancer. 

What would be different? Would I be as protective of my family? Would Rebekah have the same friendships she did then now - because none of her close friends are the same? Would Audrey have matured as much as she has? Would Alan or I have the jobs we do today? Would our relationships with our parents, siblings, grandparents look how they do today? What about our nuclear relationships - how would they be different?

I have always tried to focus on the positive changes in us due to cancer. I know these experiences have given us deeper meaningful relationships, and definitely a deeper faith. 

But today it just struck me how much cancer has taken. Their carefree childhood. Friendships. Time with him while he was sick. Time with me while I worked to provide, when he couldn't or time with me while I cared for him. Career changes. 

Just these last 11 weeks have changed me. I see it. I feel it deep inside. I don't see or feel the changes in the girls as much, but I'm sure they are there. How can they not be? They aren't insulated from the challenges these 11 weeks have brought.

If 11 weeks has changed me so much, how much more have we all changed over the last 6 years... I'll never know. We don't get do overs. There is no crystal ball or snap of the fingers that allows us to make different choices than the ones we already made. Nothing to show us the life we would have had of cancer never came. 

God has guided us down this path for a reason. And even though I hate cancer and hate some of what it has done in each of us, I am grateful. Which is such a weird tug of war of emotions. I just want to sit and cry at the pain, fear, loss we have suffered. And yet I want to sit and rejoice at The Lord's faithfulness. 

So for now, I will sit and let My Lord comfort my tears, my fears, and my hesitations for the future. I will let Him focus me on the blessings of today instead of my worries and my regrets. 

Lord, I fail so often. I say the wrong thing. I say nothing when I should speak. I jump to action when I should sit. I sit when I should act. Thank you for your grace and mercy over me. Thank you for your forgiveness and your love that I don't deserve, but You gave anyway through the sacrifice of Your Son. Lord, heal us all. Lord, use us for Your Glory in spite of our failings. - Amen

Recovery Day 73

Over the last week his drain has gotten cloudier and cloudier in the output. While the output has decreased from 60 ml a day to now closer to 30 ml, the amount and cloudiness is concerning to us. Yesterday was 2 weeks since the drain was put in. They had hoped for only 10-14 days but with the output level, there is no end in sight. 

Christmas morning I noticed a spot on his incision that looked like it it had been rubbed raw or blistered. We snapped pictures and used a bandage and some of the antibiotic ointment that was leftover from when he came home. It got worse Monday and Tuesday to where it looked like it had infected fluid bubbling out of it. We snapped more pictures and sent them to the team, expressing our concerns. 

Wednesday around lunch time, Thuy, Dr. You's nurse responded and said the docs were all out but Karen, Dr. Fournier's PA could see him at 10 on Thursday. We jumped on it. And then the plastics doc's nurse called later in the afternoon and offered Friday but really wanted to see more pictures. We stuck with meeting with Karen today. 

This morning we drove down just after rush hour to what feels like our second home. Got princess parking on my favorite floor of Garage 10. The GI Clinic on floor 7 at Elevator A was an empty floor, literally empty. Daniella, Dr. Wise One's nurse got to us right away. 

Karen isn't sure exactly sure what is going on with the incision issue. She thinks it could be another fat necrosis pocket or his body reacting to one of the deep sutures or the infection but she hopeful it's not that. She wants us to watch it closely. The cloudiness of the drain output she is also hopeful is the dredges of the fluid pocket. 

Alan started back walking Monday after feeling bad or about 2.5 weeks so. Karen thinks that his walking is helping get all the junk out of there. Since Alan is still having some UTI symptoms, Karen ordered another urinalysis and urine culture. Since today was the last day of his current antibiotic, she refilled it until we know if something other than Augmentin would work better. 

So for now we wait. We wait on the infection to get better. We wait to see if the incision site gets worse. We wait to get the drain out. We wait on the fevers to stop. We wait on him to be able to sit normal. We wait on him to not need assistance with normal activities. We wait on complete healing. We wait on God's timing.

Recovery Day 65

So today marks 7 weeks since Alan came home. 7 very long weeks. 

The cultures on the fluid in Alan's pelvis have all come back now. It's confirmed he has Strep B, E. coli, and prevotella bivia. All are gut based bacterial infections. He is on his fourth round of antibiotics! 

Generally since last Wednesday's drain placement, Alan has had a lot of pain where the drain is, continuing low grade fevers, and between 50 ml and 70 ml of fluid removed through the drain daily. 

The last couple of days he has been more tired and more run down. Sleeping more than in the past and just generally feeling off. 

Dr. You believes the best thing is the drain. Getting all the infected fluid out as possible. It mostly looks fine but occasionally has puss remnants, like grimy little bits of puss flakes or something. I can't think of any other way to describe it. 

In good news Alan's bed sore is finally healed after 6 weeks of treatment. Sadly he can't really tell due to the drain placement being so close to where the bed sore was. 

While Alan is healing as best he can, Rebekah had her wisdom teeth out yesterday. Her top right wisdom tooth was still to high up that he was unable to remove due to the proximity to her sinuses. So he left it to remove later. 

She was pretty amusing post surgery as she was quite mad she was not allowed to have Chick-N-Minis. She has tolerated liquids and soft foods well today. Hopefully she will be able to eat some of our Christmas dinner. 

An update on Audrey, since I haven't mentioned her in a while. She has focused intently on her physical therapy to heal her back. Band kept her from healing but thankfully she stayed at a steady place throughout band. Thankfully she was able to decrease next week down to once a week. We continue to pray that she will stop having regular pain from the accident in June. 

We are looking forward to calm, low key Christmas of healing. I pray all of our family, our friends and our chosen framily have a wonderful holiday. For those of you mourning this season, we pray so deeply for you in your grief and we love you. 

Recovery Day 58

Maybe now the setback will start to heal, and we can now start upward momentum again!

Today was drain day! They moved his "call time" up by 2 hours late yesterday due to another cancellation! So we missed the rush hour traffic but still made it down there fairly early. 

By 1 he was in recovery! Everything went well with the Interventional Radiology team. After an hour in recovery, I got to harass him by his forced time in a wheelchair! We went from the 3rd floor Elevator E to the 7th floor Elevator A. If you haven't spent time at MD Anderson, that means nothing. But to those of you that have found yourself in the maze of these buildings, you get it. 

The waiting room was completely empty of the CRC/GI Clinic, which was something we had never encountered before. Kelly, Dr. You's PA had told us yesterday to come by after the drain placement so they could change out the bag IR put on. Since the clinic was empty, it took them a bit to find someone from her team!

After the nurse shows us to the room, this head peaks around the door frame and Dr. You is there. Nurse Thuy brought in some supplies then we watched the bad mammajama that is Dr. You! She proceed to change the bag on the drain from a basic gravity bag to a suction bag with a valve for flushing. Watching a surgeon work is always fascinating, but especially today. She cut the tube and placed the suction bulb on it. Then she got the valve placed on the line where the smaller catheter connected to the tube leading to the drain. She left to get something else and then came back with a face shield! She removed the cushion on the shield that goes around the forehead and created the cushion for the valve so that it wouldn't hurt him if he sat or leaned on it. Her skill was impressive, but her compassion was equally such. 

She told him to plan on 10-14 days on the drain. She relieved the IR team had removed 50 ml of milky puss from his pelvis. The fluid was running clear after they had suctioned all the infection out of him! 

Nurse Thuy taught me how to flush the drain and we headed home with tons more medical supplies for the maintenance of the drain. 

Tonight he is wiped out from the anesthesia. And we have no idea what things are going to look like as we figure out living with the drain. Christmas celebrations start Saturday and right now his attendance is majorly in the air. Tuesday Rebekah will get her wisdom teeth removed. 

Truthfully we need prayer. Alan is hurting post drain placement. I need a moment or two to process. Cancer sucks. Even with cancer no longer visible on a scan. Even with it supposedly gone. Cancer's effects are deep wounds in our bodies, minds, and hearts! Today he and I are feeling the full effects in every aspect possible. So tonight we hold tight to he's here and will be for the foreseeable future. 

Recovery Day 53

The end is not in sight. This recovery is soooo much of a roller coaster! And I LOVE roller coasters! I mean my dad and I rode the Texas Giant 23 times in 2 days the year it came out - that's how much I love roller coasters. I rode my first one at 5 and never looked back! I loved it!

This roller coaster is not fun! It makes me scream but not with joy! It makes me cry but not out of excitement. 

We knew this would affect the end of band season, Halloween, and probably Thanksgiving. But now it is impacting Christmas and we are NOT okay. 

So the fevers are mildly better last night and tonight, so that's good. He's felt off though the last couple of days. Then yesterday he almost passed out in the morning. Thankfully I got him to the bed in time. Scared me. It's the second time that has happened. But it has been a while since the first time! 

So work from home is a must right now. I cannot risk him passing out with no one home. We have fought cancer too hard to have him hurt himself by passing out on this tile floor!

Alan and I with all our medical degrees (ha!) believe that the fluid in his body is infected and it is causing his fever. And since the fluid is right next to his urinary organs, it is impacting the UTI and its lack of healing. After 5 days on Cipro last week and now Cipro and Flagyl for 5 days now, it's better but not anywhere near healed. With some other symptoms, we really, really believe this is the root of it all. 

Dr. You's actions seem to think that too. She has been in a rush to get that drain put in to remove the fluid. They have been pressuring the Interventional Radiology teams at every location to get him in on any potential cancellation. 

Today we were offered a 6:30 am slot on Tuesday at the Med Center. But unfortunately due to an item on the Commissioners Court agenda, I am needed there at 9:30 that morning. So I told Alan to take it anyway because he matters more than anything else! Two fabulous friends reassured me about my choice, as I was crying about how wrong it is that I feel like I can't be there for my husband like I need to. 

Praise be to Jesus though, when Alan called IT Scheduling back, they had a 12:15 on Wednesday that opened up in the Med Center. So Wednesday we will go in for this procedure to place a "deep drain" in him to try and get all that junk out of him. Praying he doesn't have to have the drain long and that this finally resolved all his setbacks and issues. Praying that there are no more issues after this. Praying it doesn't impact Christmas as much as looks like it will. Praying for his healing and my heart! It's so heavy with worry for my husband. 

And my praise, as I will always find the positive, while this Christmas looks to be different, we will make the most of what we can!

Recovery Day 49

7 weeks! So I haven't updated since last week because it's hard to know how to update. He's not horrible. But he's not well. 

So last Tuesday Alan went to the ER at MDA at Dr. Fournier's insistence that morning. They took blood, urine, CT Scans. The thing we were hoping for happened, a minor infection was found! It was just an UTI and he was getting kicked outta there! Praise Jesus! I had run home to take Audrey and I to our appointments that couldn't be moved. After those were done, I met Rebekah so she could take Audrey home and I could race back to the med center to pick him up. 

BUT on the way down Alan called, the radiologist had seen an irregularity on the CT Scans and was going to discuss it with Dr. F before Alan could be released. So I didn't have to race as fast now since we were in a hold pattern. 

After I got back, Dr. F came by and explained. The radiologist had noted fluid and air in his pelvis. This is not uncommon post-MOAS he explained. So we were going to get the UTI handled and then if he didn't feel better in 24 hours we needed to let them know. We got home about 10 pm. Long, long day! But we were grateful. 

Today was his two week follow up with Wound on his bedsore and follow up with Dr. You on the fat necrosis that is still seeping from drain site she had in him before release. It worked well for her to also follow up on the ER visit. 

So Wednesday through last night, Alan was on Cipro for the UTI. But every day the same thing happened, he acted like the little kid he really is! Like most moms know, your child will be fine ALL day long, even appear to be getting well and then as soon as the doctor's office closes and night starts to fall, BAM they have a fever out of nowhere. Yep, that was Alan night after night for the past week, starting at 5 to 5:30, his chills would return, his temp would start slowly rising. He was due for Tylenol at 8 but we would wait until 9ish to see how high it would get over that hour. He would top out around 100 and then take Tylenol and go back down. Around 5 am he would wake up dripping with sweat and his fever having broken. So we have been very confused as to whether this was just the UTI being a really bad one or the fluid being an issue too. 

Wound was wonderfully helpful today. They were able to remove all the dead skin from his bed sore. We have another treatment to use in this phase of the healing process. Today's nurse set a follow up for the 19th but has hopes we will be able to cancel it!

Dr. Y had called while we were driving down. She had a conflict come up at our appointment time so she asked we come straight over from wound and ask them to page her. We did and were seen really quick. 

She didn't like that he was still running the temp in the evenings. She ran another urinalysis which is better but not well yet! She put him on Cipro again and another antibiotic to finish off the infection!

She is concerned about the fluid because it's more than they would expect. So she is getting him set up with Interventional Radiology to have the fluid drained. Not sure how soon this will be set up or what all it entails, but I'm sure we will find out soon!

I'll keep you all informed as we move forward along the path of this second setback in a week.