Paul ended up in the hospital last Friday, December 21st. We took him up to the Acute Care Center at Huntsman first thing in the morning. His pain started Thursday afternoon and just was not improving. We figured he probably had a bowel obstruction, since the symptoms were the same as the last time he had a bowel obstruction earlier in December.
We were right about his bowel obstruction…only this time it was worse than last time. Once again, he was admitted to Huntsman Hospital. He was given pain meds and IV fluid. The doctors said they were going to try the conservative approach again…in other words, he would receive pain meds, bowel rest, and fluid IV’s.
By the second day, I started to request TPN (total nutrition through a large central vein). The doctors were very hesitant because of the potential side effects from TPN (sepsis, liver and kidney problems, potassium issues, etc.). There is some risk to TPN, but I knew if we did not do something, I was going to lose Paul very soon. He had not had much nutrition going in to his body for the past couple of weeks and was dropping weight very rapidly. He was very weak and lethargic.
The doctor that I was talking to about TPN was a resident. He was a little bit full of himself. In fact, he really is the only doctor we have had at Huntsman that I did not particularly care for. The first day we got in there he told us we should put Paul as a DNR (do not resuscitate) because his kind of cancer is so fatal. He told us that he didn’t have a good chance at surviving if something were to happen. Our daughter’s Katie and Sheila were there with me…they were a bit freaked out about his attitude as well. He was very gloom and doom. I started calling him Dr. Doom after that (not to his face of course).
Dr. Doom acted as if Paul was a lost cause anyway… I tried to explain to him that I wanted TPN because if Paul were to be eligible for any possible trial drugs or chemotherapy he was too weak and would not be a candidate. He did agree with me that he was too weak. He got really snotty with me when we discussed TPN. He said, “There a lot of risks associated with TPN.” I said, “I am aware of that.” He said in a cocky attitude, “Really, what are they then?” I proceeded to tell him all the risks. He just looked at me and said, “Okay, I guess you do know.”
The irony in all of this is that Dr. Doom was so concerned with the risks of TPN, yet he kept talking about Paul as is he was a lost cause because of his “kind of cancer”. I finally said to him, “Look, if Paul is going to die anyway, let’s just give this a shot. As it is, he can’t have surgery because he would not heal, and he can’t have chemotherapy because he is malnourished. At least if we get some nutrients in him he might be able to have chemotherapy for palliative care.” He said he would talk to the attending about this.
On Sunday morning, Dr. Doom came in Paul’s room at about 5:30 a.m. He did not know that I had spent the night. I had the curtain pulled on the other side. I could hear his conversation with Paul. Guess what? He said to Paul the exact same things I had been trying to tell him all along. I got up and walked around the curtain and he looked a little shocked. He said hello to me. He said they were going to start TPN that day.
When the attending physician came later in the morning with the team he told us that they would be starting TPN at 6:00 p.m. that day. By the way, the attending was very nice. He works directly with our oncologist. It was kind of funny because we recognized each other when he came in. He was the doctor I stopped in the hall, last time I was at Huntsman, to go and check on Paul when he was in the bathroom puking. I was bawling my eyes out at the time, pleading for him to go in the men’s bathroom because I was so worried about Paul. He checked on him for me and told he was just throwing up and would be okay.
Anyway, there was a plan put in place on Sunday. We would put a Fentanyl patch on for pain and have a pain pump still with Dilaudid for “break-through” pain. The patch is effective for three days and then needs to be changed. The whole goal was to get him ready to go home on Monday, December 24th. We really wanted him home for Christmas. Oh yes, they also put a PICC line in on Sunday as well. They planned on running the TPN through the PICC line and using his port for his pain meds.
My biggest frustration while at the hospital this time, was the feeling that they were going to let Paul starve to death. I mean this literally. I told them I was not willing to watch him starve to death. I just kept getting the feeling that they thought he was a lost cause and it would be better to just let him starve. I told them this. I felt like the longer we waited to start TPN the more ground we were losing. He had already been four full days without any food. He was already weak because he had not had much nutrition for several weeks.
As I left the hospital Friday night, I felt very overwhelmed and saddened. The doctors gave us very little hope. As soon as I got home, my daughters went to spend the weekend at their older sisters home. Our dog wasn't even home because she is being doggy-sat! I was at home by myself...I looked at pictures of Paul on the wall...I felt so completely alone...I totally lost it...I cried and cried...I finally called my friend...she came over and consoled me.
It is so hard. You mourn, get your hopes up, then you mourn again. It is like being on a constant roller coaster. You can see the inevitable, yet you still try to have hope. You don't want the person you love so much to suffer, yet you don't want to let them go either...Paul has said he is not ready to go yet....he still wants to fight...when he is ready to go...I will have to let him...
Seriously, I did not think we would be bringing Paul home from the hospital (ever). Actually, none of us did. He was in pretty bad shape. Fortunately, we were able to bring him home on Christmas Eve. We were supposed to leave at 1:00, but due to errors (sent the wrong pump) we didn’t get out as early as we were supposed to. We got home about 4:00 p.m. Paul was still pretty out of it…but it was just nice to have him home!
I hook Paul up to TPN every night and let it run for 12 hours. He is getting all of his nutrition through his veins. He still is not eating or drinking. On a plus side, his bowels are starting to work again! I never thought I would be so happy to hear him fart! Yep, I said the “f” word! It started to happen on Christmas day…we thought it was a great Christmas present! Those of you who don’t know, it is crucial that you pass gas and have bowel movements. If your bowels are blocked this does not happen. So, it is a good sign when there is movement…we get very excited to hear those lovely noises! Never thought I would say that…
We have a home health nurse coming 2 to 3 times a week to check on Paul (change his port access once a week). I am glad that I already knew how to administer TPN and flush PICC lines, etc…I learned that one year ago. Our home health nurse was glad that I already knew as much as I did, because it was Christmas Eve and things were a little crazy! In fact, we brought Paul home from the hospital on December 23rdlast year after his stomach removal. I am starting to dislike December a little…
Paul started to improve yesterday. Today has been even better. He has been up and moving around a bit. His color is better and he doesn’t look so sickly. He has actually been talking a lot more and sleeping less.
My brother-in-law and sister-in-law flew in Sunday from Colorado. They stayed with us until today. They were a huge help to me! We will miss them! I cried as they left…
My heart is full of gratitude to amazing family and friends. So much kindness and love has been shown toward my family. I wish I could send out a personal thank you to everyone, but I just do not have the ability to do so. I don’t even know who many of you are…kind elves and angels that help anonymously. Please know that everything that has been done is so appreciated. My children were so blessed for Christmas this year. They told me this has been their best Christmas ever! What a beautiful thing to hear at such a sad time in our lives…
Love to you all! By the way, we still don’t know the results of his biopsy…yep, we know it has been ridiculously long!