Tuesday, September 17, 2013

Summer, Update and Hospice

Well a lot has happened since I last blogged.  I had to take a break during the summer and focus on my family.  The last we left it was that the trial was continueing on.  We did the treatment after the scan and everything went the same.  We came back to Augusta and he slept and slept and slept, like he always did after treatment.  Three weeks later, just when he got to feeling better, it's back to Houston.  Remember we were doing treatment every three weeks and scans every six.  So the next trip was just treatment but no scan.  This was the worst treatment yet.  Dusty did not do well with it.  He had screaming pains.  One night his pain escalated so suddenly that he woke screaming.  It was around 3:30  am, I jumped off of my little couch bed and ran to his side.  He was screaming, "This is it!" and started saying his goodbye to me, telling me he loves me, thank you and goodbye.  I started yelling for help and hitting the panic button.  Dusty started convulsing so I jumped onto the bed and held his back and thighs in the fetal position to hold him still.  The nurse came running in and quickly pushed some pain meds.  It took about 30 minutes for his pain to get to a manageable level.  He really thought it was the end.  So did I.  I've never been more scared.  They slowed down the chemo and extended it from 46 hours to 48 hours on a slower drip.  The next three days were up and down with pain management.  We came back to Augusta and he slept and slept and slept.  Since the last experience with chemo and his pain levels were so difficult my mom decided to come with us for support.  She was flying west anyways so she stayed in Houston with us for a few nights.  We were getting results during this visit, which makes everything seem like it's moving in slow motion.  Time just ticks when scanxiety is up.  Dusty had his scan on Monday.  Monday night we just went back to the hotel and did what we normally did, medicated to sleep to try to speed up time.  Tuesday morning my mom arrived.  Our results appointment was in the afternoon so we had to deal with scanxiety all morning.  We went into to the doctor's room and waited.  It seemed like eternity.  Mom was trying her best to stay positive.  We were skeptical since he had lost so much weight and had been very fatigued.  Dusty had lost 18 pounds in 6 weeks.  The doctor came in, sat down and said, "I wish I had better news."  Damn.  Dusty just bowed his head.  We knew this was the end.  Our last shot.  Dusty said, "What now?"  The doctor left the room.  He came back with some papers on a new trial that they were offering.  He seemed like it was a shot in the dark.  He didn't have confidence in his demeanor when he was presenting it to us.  I think he just didn't want to say that he didn't have anything for us.  I'm sure it's hard to tell a 29 year old father of two that he is going to die.  I asked if he knew if Emory had any clinical trials going on that we could get into.  He left the room to check into Emory on his computer.  He came back in with two clinical trials that Emory was offering that Dusty could try to get into.  Of course we asked the dreaded question again, "how long?"  I'm not going to focus on his answer.  They have given us timelines since December that we have continued to overcome.  Dusty is not the traditional EC patient, he is half their age.
We felt good about going to Emory.  It is a way to stay close to home and not miss valuable time with our kids but still continue the fight.

Next we decided to take some time away from cancer and live a normal life.  My aunt and uncle let us use their beach house in Edisto so we went with Dusty's mom, sister, brother-in-law, niece, nephew and our boys.  Dusty was feeling much better since it had been five weeks since his last chemotherapy treatment.  He took a low dose steroid to help with energy and appetite.  We had a wonderful time in Edisto.  We cooked great meals, played cards, sang karaoke, went to the beach, and enjoyed the most colorful sunsets nightly.  On Friday a friend was able to get us a free backstage tour of the Charleston Aquarium.  It was one of the most amazing experiences.  We were able to go into the sea turtle rescue clinical and see up close all the injured sea turtles.  We got to hold and pet many animals.  It was really cool.  That day will forever hold a special place in my heart.

Sunday we left Edisto and went to Charleston and boarded the Carnival Fantasy cruise ship.  My parents and grandma joined us on the cruise.  The Make A Wish foundation and Carnival gave us the Make A Wish rate for a five night cruise to the Bahamas with all excursions included, spa package, and two bottles of wine.  Dusty was such a trooper.  I know he didn't feel well but he didn't show it.  Monday we had an "at sea day", Dusty went to the pool and swam with the boys, watched Harland dance on the stage and watched Reynolds go down the watersides 500 times!  Tuesday we ported in Nassau and went to Atlantis' water park.  Dusty didn't do well with all the walking that was involved in the park so we eventually got settled into the kids zone and let the kids go wild while we lounged in the shallow waters.  Wednesday we ported in Freeport and went to swim with the dolphins. The kids loved it and Dusty was feeling better on this day.  Thursday was an "at sea day", Dusty stayed in the room on this day to rest.  I took the kids to the pool with my parents and spent most of the day going down the water slides with the kids.  My parents took care of the kiddos while I went to the spa to receive my complimentary spa package.  Well....I drank a little too much that day and slept through my entire massage!  Hey, I deserved a day to kick back and have some (many) drinks.  Dusty joined us for dinner.  Friday we ported back in Charleston and headed home.  We had another memorable vacation.  Cancer was not on or in our minds.  We enjoyed our families and made many memories.  "Making Memories of Us" (wedding song)

We returned from such a "high" to a major "low".  During the two and a half weeks that we were gone and thought the paperwork and release forms had been completed between MDA and Emory had not been done.  They were waiting on more papers to be signed so they never sent our file to Emory, therefore we didn't have an appointment yet.  I was furious.  Lets face it, Dusty is not getting better!  And time is not on our side.  Finally the medical records were sent to Emory and we got on the list for an appointment.  We couldn't get in for six weeks.  It was horrible.  The longest six weeks of our lives. Dusty was very ill, very weak, slept 23 hours a day, and didn't eat any food.  I was lucky to get 1050 calories down him a day, strictly liquid.  We went back and forth with starting hospice or not.  I was in constant panic mode.  I couldn't sleep at night.  I kept my hand on his chest and felt for breathing all night long only to have to get up early and take care of the kids.  I was at a breaking point.  I understand that Dusty wanted to hold on to the idea of Emory, to feel he gave every option a shot.  He thought that if he accepted hospice he was giving up.  You can't be seeking treatment and on hospice at the same time.  

The day finally came to go to Emory, August 27.  Hallelujah Hallelujah!   We went, met with the doctor and the trial coordinator.  Everything seemed great.  The trial uses antibodies instead of chemo to kill the cancer cells.  They are going to test his tissue (biopsy) to see if cancer cells have a protein that the antibodies attach to and then release a toxin that kills the protein along with the cancer cell.  The side effects are minimal because this process only kills the cancer cells, not healthy cells too (like chemo).  We signed release forms for MDA to send Emory his tumor biopsy.  They told us that it takes two weeks to complete the tissue and test and that the trial would start the last week of September.  Ugh!  Four more weeks.  Time is against us.  I asked the doctor if he thought Dusty would still be alive in four weeks.  He said he did not know.  We left Emory with a positive attitude and felt like maybe we had another chance.  We were supposed to find out on September 10th if he had the protein.  I called on September 11th to find out if they had any answers for us.  Ironically later that day I get an email from the trial coordinator that MDA needs us to sign their release form to release the tissue sample.  WHHHHHHAAAAAAATTTTTTTTTTT???? @#$%***@#$%**  YOU MEAN TO TELL ME FOR TWO WEEKS (AGAIN) NOTHING HAS BEEN DONE DUE TO STUPID PAPERWORK???????  I lost it.  Literally lost it on the phone.  I asked her when did she find out that they needed the paper signed and why am I just now hearing about this.  She wouldn't give me a straight answer.  I pulled up my email and the attachment that she forwarded to me on September 11 was dated from MDA on September 3.  She avoided all of my questions.  I wanted her to take responsibility that she royally screwed my husband's chance at probably getting into this trial.  So now, we are waiting again for the results of the test.  Then she tells me that he can't start the trial at the end of September because there are not any openings.  He is on a waiting list to get into the trial.  They are playing puppet with my husband's life.  It's a joke.  I could have reached through the phone and strangled that woman.

A few days went by of Dusty getting worse and worse.  He had taken a few hard falls and could barely walk anymore.  He has been refusing nutrients and losing more weight.  We made an appointment with our local oncologist to see about getting a feeding tube placed to try to build strength for the trial.  The doctor highly advised against the feeding tube.  Said that it can be painful and cause difficulties and infections.  It could cause Dusty to eat more pain pills because of discomfort which would not lead to a better quality of life.  Dusty has developed tumors that you can now feel with touch.  The doctor said that his body is completely covered with tumors and he will be too weak to start the clinical trial.  Emory has not done a PET scan so they don't know the magnitude of how advanced Dusty's cancer is. The doctor does not think that Dusty will make the trial.  He suggest that we start hospice and enjoy what life he has left.  Dusty said he wanted to make it to Christmas.  I said, "Lets get a tree!"

We started hospice that day.  They changed his pain meds from a bunch of short acting pills every few hours to 12 hour pills twice a day.  This helped Dusty with his energy.  He became much more alert.  Hospice has been such a relief for me.  It gives me a "go to" anytime I have concerns.  We have an awesome nurse that I'm comfortable with she is a great support for my family.  We've talked with the Chaplain and she is working with Reynolds on opening up.  Reynolds will not talk about his dad or his feelings.  I worry about him a lot.  All in all, hospice has been a fresh of breath air.  They are making Dusty's quality of life much greater.  And, if Emory every gets their shit together and we can start the trial, all we have to do is revoke hospice.

Dusty was able to go to my mom's 60th birthday party that weekend.  Then the next weekend we celebrated Christmas.  The hospice nurse gave him a low dose Ritalin to help with energy on days that we want him to be up and alert.  He sat on the couch all day Saturday and Sunday.  He enjoyed Christmas with the kids and lots of family and friends.  It was a magical Christmas!  Everything was perfect.  We enjoyed lots of gifts sent in from people all over the United States, Christmas carolers, Mr. and Mrs. Claus showed up and our family photographer, Jessica V Photography, came and took pictures both days.  It was great.  The only difference in the real Christmas and our Christmas was the weather.  Other than that, it was Christmas!

Dusty continues to lose weight.  He is down to 127.4, total weight loss to date 133 lbs.

We are living day by day!  Dusty is showing more love and opening up again.  We are cherishing every moment.  Life is short, Love is grand!  Hold your family extra tight and never forget to tell the ones that you love, "I love you!"


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  2. Hello Haydens :) Stacey, thank you for writing this and letting us know how you are all doing. I love the Christmas-it sounds like it was a beautiful celebration! My love and hugs for everyone involved with Team Hayden. :) Juli (Pedraza) Hardy

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  5. Stacey,

    We have never met and probably never will. I saw your blog from a post from a friend and have been praying for your family. Your strength just in reading these posts is astounding. May God heal your husband, and strengthen and comfort you, your boys, and extended family and friends.

    Praying in Dallas.

  6. We don't know each other, but I came across your story. I was so glad to see that you celebrated Christmas together! That itself is a gift. Sending virtual hugs to your family from one blogger to another!

  7. Thank you for sharing you story. My best friend's wife was recently diagnosed with breast cancer. I will share your blog with him.

  8. Thanks for the update Stacey. I know it isn't always easy and I do appreciate you both sharing and keep us updated with your journey. I was reading a few of your older posts and had a quick question about your blog. Could you please email me whenever you get the chance? Thanks so much.

    PS. The photos look great!