Pain and The Hard Talk

“There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.” 
― Erma Bombeck

Dear Family, Friends and everyone else.

We went in yesterday to Duke to see Dr. Hanks.  It was just a check up to see how Jack was doing after last week's visit and anti-PD1 treatment and after being in the hospital.  Dr. Hanks wanted to see how Jack's numbers were looking, how the drain was working and to talk to him.   He also added chest and abdominal x-rays because Jack has a cough and has been constipated.  He wanted to make sure that there wasn't any fluid in his lungs and that his bowel wasn't obstructed.

Jack's numbers came back great.  His protein levels are improving (Jack is working very hard at eating more) and his sodium levels were normal.  He also does not have an obstruction nor did he have fluid in his lungs - great news!  Jack has developed a rash on his back and also a case of thrush... both side effects of PD1 - so even though the side effects are bothersome, we know the drug is doing something.  hopefully it's doing more than just creating fungus!

We also found out that his drain wasn't working because he isn't having any fluid build up - Dr. Hanks ordered a CT scan to be sure.  It wasn't with contrast so they couldn't see exactly what the size of the massive tumor was - but it didn't look as though it had grown to the doctor who looked at it.  

Before they checked out the drain though, Dr. Hanks had the hard talk with Jack.  He explained to Jack that it is his inclination to keep trying to cure him.  That is what he does.  But it is Jack's decision when he chooses that the pain is too much and wants to go into pain management and hospice care.   Have I told y'all how much I love this Doctor?!  Usually he speaks to Jack and to the entire room.  This talk he had with Jack.   He looked over at me - but focused on Jack to make sure Jack was understanding him and what he was saying.  As most of you know Jack is rather hard of hearing and the pain meds (and brain radiation) make it hard for him to follow a conversation in the room.  But Dr. Hanks  made sure he understood.  This is Jack's choice to make.  As long as Jack wants him to, he will continue to fight for Jack to make him well.  Jack understood and is good to go for his next dose of treatment on the 15th.         

Thankfully, this visit Jack's ex-wife Lori and her husband Lanny came with us.  They ended up staying with Jack for his trip over to the ER to get the ultra sound and CT while I ran picked up more merchandise I had ordered for the store.   They got to experience the day long activities at the Cancer center and then the ER - and you know what fun Jack and I have had in ER's.  All of us had been without food all day so at 6:30ish the nurse brought us all bagged lunches and ginger ales (they didn't want jack to eat before they checked him out).  We had just started a little picnic there in the ER room when the doctor came and told us we could leave.  I could not have done the day without them and I know Jack was glad to have them there too. 

The doctor has/had prescribed Jack ambien to sleep but he hasn't taken it.  Lanny told him yesterday how he takes it for the pain in his leg that keeps him up and how it would probably help Jack a lot.  It did!  Jack slept last night better than he's slept in weeks, only getting up a few times and going back to sleep within 15 minutes.    

Pain~
Cancer sucks.  I know, you don't need me to tell you that.  Especially if you've gone through it yourself or with someone you love.  It's hard watching the one you love hurt - for whatever reason - but harder when there is little you can do or if you feel out of control of the situation.    Evener harder when everyone is doing everything right, but that one blockade.  That one obstacle that is making the one you love suffer more, unnecessarily.   And when that blockade doesn't have a face what do you do?  

So I want to share with you some of the aggravations  I have had in trying to manage Jack pain.  Jack has never been big on taking any medications, he would balk at taking an advil unless he really hurt.  So when his pain level increased we knew it was serious.  The Doctor wrote us a prescription for oxycotin.  I've watched Justified - I know it's big on the street - but this is for someone diagnosed and suffering from stage 4 cancer.  (There are 5 stages of cancer - stage 0 - 4).   we went for days trying to get it filled at Walgreens here in Boone.  I kept getting from them that they were waiting for approval.  So I called the doctor a couple times, each time they said they approved it.  Finally I thought for sure it had to be approved by now (after 4-5 days of us rationing what we had and not managing his pain very well)   Someone told Sarah to go across the street to CVS with the Rx.  She did and we got the drug in minutes.  Jack ended  up the following day in Duke hospital to try and get his pain under control.  We were there for 4 days (this was right before his last PD1 treatment.)  

Last Friday, after his treatment the doctor gave us a new drug Rx.  one they had used in the hospital that worked for Jack.  I took the prescription to our pharmacy - Walgreens on Saturday.  Daily I kept getting texts that is wasn't ready.  I called and talked with the pharmacist on Monday and they said they were waiting for doctors approval.  I called the doc (again) and they said they would take care of it.  I called on tuesday - same thing.  I called the doctor and they said they gave their approval... so I asked the pharmacist if it was medicaid.  They said yes.  I called on Wednesday - same response.  Thursday I was busy and couldn't call - but I got another text saying it still wasn't ready.  Friday I called Medicaid on our way to Duke.  Guess what - they approved it on Wednesday (why so long - another question?)  But Walgreens said they were still waiting on approval.  Today I went to Walgreens to pick it up... found out it is THEM holding it up!  The cashier there said it didn't have a price so it was adjudicating in their system so she couldn't give it to me.  Please, someone explain this to me.  Talk about a 'really' moment!  I asked her to give me the prescription, went over to CVS across the street and they filled it within minutes.   Walgreens just lost one loyal customer.       

Thank you for all your continued love, prayers, support and postive thoughts and messages to Jack and I.  We are truly humbled by all the blessings, care, love and help we've received through this

Peace, Love and Hope for the cure

Helen

“One word
Frees us of all the weight and pain of life:
That word is love.”
― Sophocles