brenda1962

Hey it’s me again.

Thanks for the thoughts & prayers. We buried Don on May 23rd and it was a beautiful funeral. I let our children pick the songs:
1. Heaven Was Needing a Hero
2. Live Like You Were Dying
3. Fat Bottom Girls….it was his favorite song….lol.
We had everyone there singing with the song. Everyone loved how we did it. I ‘ve tried to sleep in our room but have only done it once…just not the same.
While we are trying to heal from his lost…I received a call on Friday,May 25th. It was a call that we didnt plan to get…his brother in Florida had died. Two deaths in the family in 6 days…not sure how to handle this.
I guess that ny body is trying to recupe from the last few weeks cause all i do now is sleep. It’s hard each morning to get my eyes open so I sleep some more. Thankful that School is out for the summer and my 16 yr old passed his exams. He was promoted to the 11th grade with a 3.0 GPA. I am very proud of him.
Well getting off for now. Have alot to think about & to get done before leaving this next weekend for Florida. Please keep our family in your prayers.

I was going to update on everything yesterday but slept most of the day…and so did Don. It has been so busy here with all the ppl from Hospice.
Monday- Nurse to check his vitals,meds & see what items she needed to order for him
Tuesday- Hospice nurse & a nurse-in-training, social worker and the delivery man bringing his bed,wheelchair and oxygen.
Yesterday-Hospice Chaplain,nurse and aide.They had ordered meds,which came…the box of emergency meds is what they called it.
Today or tomorrow is suppose to be the nurse again.
The nurse had said to give him his ativan b4 bedtime so he would sleep. I have done this for 2 night straight & he stays up, moving all the time. He would lay down for about 10 mins & then was up again…repeated this all night long. Had to use the oxygen last night because he was short of breathe. But he kept taking the nose piece out.
He is now resting in the recliner because he said the bed was uncomfortable. Last night our oldest son came by to see him & Don said he didnt know who he was. Also told him to get out….which upset our son. He left a few mins after that…I told him that his Dad didnt mean anything by it & that he still loved him. I then walked back in the room & Don asked where did he go. I told him that he told Donny that he didnt know him & yelled for him to leave. Don then told me …”I was playing with him…he should know that.”
Don is drinking less and only about a bite or 2 of food a day. Only went to the bathroom twice yesterday. Feet are still swollen and it hard to get him to put his feet up. Now he is constantly taking the oxygen off but he really needs it. Breathing is very short & he’s coughing now. And for some reason his right eye is very bloodshot. Going to get off & try to get some rest while he is resting & before the nurse calls.

Oh and b4 I forget…@Lainy -thanks for the kind works. I mentioned what my friend had said about me to the chaplain yesterday. He told me that I was not in denial…that I very much knows what is going on & what is going to happen. That I will cry when I am ready. And if I needed to talk to call him and he would be back out here.

Sorry I havent updated… been busy trying to get some relief for Don. He was stopped the radiation to his spine…he didnt feel it was helping with the pain. Inoticed last Thursday that he was swelling from the calves down to his feet. Contacted his oncologist & was prescribed Furosemide to take. And decided to have Hospice come in. A nurse visited on friday & was getting ready to order the bed & other equipment that he would need. Then his insurance decided that if we used this hospice that we had to pay $4,500 upfront and the ins would pay 75% after that since they were out of network. This nurse took it upon herself to contact the 3 hospices listed that were in network & none of them would come into MS….they were in TN And Arkansas.
The Insurance then told her of 1 about an hr away south of us. That nurse came out yesterday and another one will be here shortly. The insurance will pay 100% after his deductible of $1,000 is paid up front…thanks to his younger sister & her husband it will be paid this afternoon. Hospice is going to schedule an aide to come starting tomorrow for 2 days a week…& if needed they can add more days.

@Pamela: Thank you for saying that when you dont know me! And Thank you everyone for the support! This weekend has been rough. Don’s oldest sister came to visit and he was only able to sit with her for about 10 minutes….he had to return to bed. He’s been sleeping sitting up because of his pain which is only a few minutes at a time. He had tried to lay down but too much pain. We go back to the dr tomorrow. He’s suppose to receive an IV of Iron and see the dr.
I told his sister of his wishes of DNR and she said that was all she needed to know…if he was fine with that, then so will everyone else.
He told me tonight that he cant take much more pain …that the dr has to do something tomorrow to help him.
I’m usually a strong person but I have done nothing but cry since his sister left. When she got ready to leave she promised to be back this weekend or the next. I told her she didnt have to do it ..she lives 3 hrs away and the drive is rough on her. She told me that he’s her baby brother & it’s not suppose to be like this…she’s suppose to go first. She took care of him & the other 4 while growing up because their mom was supporting them working 4 jobs. He is the next to the baby.
Goodnite everyone!!! Again thanks for the support!!!

We have always discussed things openly with each other. I guess that is why we are still together after almost 33 years… both very hard-headed…lol.
He started out taking Morphine 15mg twice a day. As the pain increases he was put on 30 mg twice a day with short-acting Morphine 15 mg every 4 hrs. Less than a month ago he was put on 30mg Morphine 3 times a day with the 15mg Morphine still every 4 hrs.
Now he’s at Morphine 60 mg twice a day with the 15 mg short acting every 4 hrs. He goes back on Monday so we are hoping the meds will ease the pain. He sleeps sitting up with pillows all around him because when he lays down his back hurt really bad.
He hasn’t been eating much the last few days but I am making sure he was fluids & tries to drink the Special K protein drinks. A lot of the foods he use to eat irritate his throat & hernia.
We also have a 3 year old grandson who LOVES his PopPop to death. Every time he sees him….”PopPop, I have to give you a kiss.” He goes over to his granddaddy and raises his shirt & kisses Don’s right side. It makes me cry every time he does it.

Thanks everyone for the warm welcome!

All of this started July 2011, for the 1st two weeks my husband complained of headaches, belching & pain in the upper stomach area. Finally I talked him into seeing a dr on July 20th and he was diagnosed with High blood pressure & heart was racing. The dr called an ambulance & he was taken to the ER. Once there drs ordered x-rays & tons of blood work. After about 5 hrs he was admitted to a room & we were told “All blood work showed was Liver enzymes were .2 above normal. An hr & 1/2 later CT & ultrasound was performed…heart dr came in & said “Apparently you’ve had a heart attack”. More test were ran up until midnite.
The next day oncology dr came by & told us that Don had cancer. CT showed spots on liver & lungs. He was then scoped up one end & down the other to see if any other problems. Was told he also has acid reflux & hiatal hernia. then by noon, heart test was done & showed needed 2 stents in heart. That was put on hold til a biopsy could be done on the liver.
Don was in the hospital July 20th-26th , we even celebrated our daughter’s 23rd bday at the hospital. He was sent home with follow-up @ the West Clinic (Cancer Clinic) in town.
His appt was Aug 3rd…had MRI & was waiting to have liver biopsy but the dr decided to do it with a lymph node in his neck that was swollen. Said he didnt want the hubby to have to indur more pain that wasn’t necessary. Results 5 days later showed no clue as to where cancer started….so more test was going to be done. While waiting for those results ,hubby had the port put in and the 2 stents in his heart.
On Aug 18th, we were told the tests showed cancer started in the liver & spread to the lungs. Cancer was called “Cholangiocarcinoma and we needed to start paperwork for disability because he would never work again.” Forgot to mention that Don is 54 years old.The dr asked if we had questions & I asked him what stage of cancer. His response was “I don’t want to tell you…it’s Stage IV”. He said I must have known what stage because I was asking a lot of questions…that I must have been looking it up. Then he said “I REFUSE TO SAY HOW LONG YOU HAVE TO LIVE”.
Before leaving a plan of treatment was scheduled & then scheduled for stents & portacath to be put in.
On Aug 31st, chemo was started with cisplatin & gemcitabine once a week for 2 weeks then off a week…this would go for 12 times. On the 5th time of treatment CT was done…showed everything was the same. Treatments continued til the 9th one ,CT showed lung spots smaller…liver the same & a spot on spine. While all this is going on, I’m at the hospital w/our 15 yo…kidney stones. It seemed like our lives were falling apart at the seams. Hubby was only able to do total of 11 treatments because of low blood counts. Last treatment was on Dec 21,2011.
Now it’s a new yr, on Jan 11th…CT showed spots on lungs were back & liver the same. It was discussed w/us about hubby going on a Trial study. We talked w/dr & our kids, decided to do it. He was put on Tesatexol & Xeloda. Did fine until almost finishing the 2nd bottle of Xeloda…had a reaction to it. Feet & hands swelled to the point of not being able to walk or hold anything…also in alot of pain. Treatment was stopped on Mar 9th.
Sorry this is so long…didn’t realize it was so late. Will write more tomorrow after getting some sleep.
Thanks for “listening”.