Monday, March 11, 2013

One Week to Go!

Don has been plugging away at this 48 week treatment since he began last April. I remember thinking when he started the treatment that these 48 weeks would fly by - boy was I wrong!! Time seems to have stopped, especially in the last six weeks - but we are finally here with one week of treatment left. Don has done remarkably well, avoided any hospital visits, and has even avoided any non-scheduled visits with the doctor. That's not to say any of this has been easy and I would not wish it on anyone, but, how wonderful it will be if he can retain a zero viral load and be free of the HepC virus. We will know in July (officially in September) if the treatment has worked. The doctor is very confident that Don's treatment has been successful and we all enjoy a nice celebration when we get that news!! We were able to take a vacation in September and Don did very well. We flew to Colorado but I called it our driving vacation because we drove all over Denver, Colorado Springs, Pikes Peak, Estes Park, Rocky Mountain National Park,and Mt. Evans Scenic Byway, but we did not get out of the car. We saw such beautiful sites and can't wait to go back once Don's energy returns!

Saturday, June 30, 2012

Good news!!!

What great news I was able to give Don after reading an e-mail from his doctor, his 8 week viral load test showed the HepC virus in his blood is undetectable!! The kids were thrilled to hear the news and Don's family was in town visiting so we were able to share the news with them which was so exciting. This medicine regime has changed Don's personality and I feel like I have to be on-guard at all times for a personality change that might come about in the wrong setting. He gets very aggitated and it happens instantly, but being "undie" makes everything we are going through worth the effort. I actually think things have gotten a little better since we received the good news. Don's major complaint is the fatigue. He gets aggravated and tells me it's because his "mind says go but his body says whoa". His shakes help tremendously with the side-effects and we are thankful everyday for that. He has not lost any hair and is not having any dry skin problems which is all good news!! We will continue with what we are doing now for the next 39 weeks as long as the virus remains undetectable, which would be the answer to our prayers.

Saturday, May 19, 2012

Moving Along

Things continue to go well with Don's treatment. The first three times Don tried to clear the virus in the late 90s and early 00s', he was started on a full dose of Ribavirin and Interferon. This time, his introduction to the medicine has been very gradual. The doctor told us that due to the liver cancer, he was going to take things very slowly. Don decided he likes this approach much better!! He is now on a full dose of Ribavirin and is tolerating it well. He will increase the Interferon next week and we hope everything continues as it has so far. A new medicine, Neupogen, was introduced this week by injection. Neupogen is used to increase the production of white blood cells. Don said it felt a difference in how he felt within a day or two of taking the shot. I am not saying there have been no valleys to traverse during this new treatment. When Don gets tired, he says it is like hitting a concrete wall at 40 miles an hour. He just stops in his tracks, exhausted to the point he is unable to move. But, after sleeping it off, he feels better and back amongst the living. He continues to faithfully flood his body with his nutritional shake and we are certain it is helping him through his treatment. At some point, a new drug, Victrelis, will be added to the mix and we have been warned that it is not pleasant. Neither of us is looking forward to it, but he wants so badly to be rid of this virus that he is willing to tackle the side effects for the chance of being HepC free!! We will continue the journey and pray each day that we will arrive at the much anticipated destination...UNDETECTABLE. So happy to have you travel with us on our way!!

Sunday, April 29, 2012

Beginning a New Journey

Last month when Don went to the doctor, it was suggested that he begin a new treatment to erradicate his Hepatitis C virus. Don was all for it and told the doctor, "Let's go!!" So begins a new journey and I hope this road leads to success for my poor husband who has has been trying to get free from the grip of this virus since his diagnosis 14 years ago!! Because of Don's liver cancer history, the doctor has started him slowly on the medications and only prescribed half doses so he can monitor the liver's reaction. So far, he has felt okay - maybe a little more fatigued and certainly a little more "outspoken"! We have decided on a secret code for an attitude adjustment when we are out in public. If I think he is being a little too "outspoken", I will simply rub and pat his arm. He is supposed to take my gentle pat as a sign that he may be getting carried away. We'll see how that works!! Our fondest prayer is that the side effects will be diminished by the nutriton Don receives through his daily shakes. He had such phenomenal results with the chemotherapy side effects because of the shakes and technically, the HepC treatment is chemotherapy, so...we are saying our prayers and hoping for the best. Don's viral load dropped from 4 million to 750,000 with the shakes during his liver cancer treatment and is now at 950,000 so we are hoping to get that number headed in the opposite direction soon. I'll keep you posted!!

Saturday, October 15, 2011

The Fish are Safe...For Now!



In 2005, after completing renovations on our home, Don treated himself to a new boat. Four weeks later, Katrina flooded our home and he had to rebuild our home from the floors up. His new boat was moved to our nephew's house where it sat covered for over a year. Once he finished the house (again), he brought the boat home and enjoyed using it for about 6 months before he became ill. Since his diagnosis in June 2008, he has been able to take the boat out a few times with family or friends along to help. He loves to take the boat to Alabama and Florida and just ride out in the open. He enjoys every minute he spends on that boat whether or not he's catching fish.



Imagine our surprise when a Wildlife and Fisheries agent came to our new home and asked if we knew where the boat was located. Don told him it was at the storage facility and we were then informed it was on the side of the road with no motor about 30 miles from our house!! The agent told Don just where it was and said the Sheriff's Office was with the boat and we could go pick it up. He showed us a picture to confirm it was Don's boat, and thankfully, it was in perfect condtion and was only missing the motor.

Don and our yougest son left immediately to go get the boat. They arrived at the location to find the boat was no longer there. We called the sheriff's office to see if they had towed the boat, but they had not. We were told because they could not contact us, they could not confirm the boat was stolen and could not tow it. The boat had been stolen again!!! I must admit I was furious that they left the boat out on the road to be stolen again and did not take the little effort it required to protect our property. All the sheriff's office had to do was call and have the boat towed. We would have happily paid the towing fees.

Well, Thursday morning, the sheriff's office called and said they found the boat and the tow truck was bringing it to our house. I called Don and told him his boat was on its way home and he was thrilled to hear that news...until the boat showed up. It has been stripped of every possible item of use. They even took the seats and the windshield!! It is simply a shell of what it had been. Ughhh.



To add insult to injury, he read the fishing report and there are fish everywhere!! Surprisingly, he is handling this all very well...just another bump in the road. If you're looking for us, we'll be at the fish market!!

Sunday, September 18, 2011

Five Feet From Where I Found You...



We have been living with my mother for 15 weeks now as we wait for our new house to be finished. My mother lives in the same house my parents built in the 50's, which Don and I rebuilt after Hurricane Katrina swamped it in flood water. I am back in my childhood bedroom and the night we moved in Don told me, "Well, I've returned you to within 5 feet of where I found you 29 years ago"! I had to think on that a minute, but realized when we met I had moved from this bedroom to the larger room once my sister had gotten married. What a memory he has!

My mother is 91 years old and has always taken very good care of herself. The above picture was taken on her 91st birthday, and looking at the picture I am sure you would think she looks great for 91!! Physically, she is doing fine and still gets around on her own. Unfortunately, dementia has taken a toll on her mind and it has been a very sad thing to witness. I am thankful we are able to be here and watch over her each day. Of course, she does not think she needs to be watched over and when we move, we will only be right next door. Most days, she does not even remember we are building a house, nor does she remember our son lives here with us as well. Almost every day she will ask who is sleeping in the middle bedroom and at night he tells us that she comes in and stares at him while he is sleeping. I know it must be an awful feeling for her to see someone sleeping in her house and have no idea who it is in the bed.

My mother was such an independent woman all of her life that it is especially difficult to see her struggle with simple thoughts, and the inability to remember from one moment to the next. I can have a reasonable conversation with her, get her thoughts on one thing or another, and then, five minutes later the whole conversation is gone, as if it never happened. What a sad, sad disease dementia is, to steal the life of an otherwise healthy person. I can no longer ask her about family stories as she has no recollection of growing up. Occasionally, from the deep recesses of her mind, a story will come back and she will share things in detail from her childhood. The next day, she will have no memory of the story or sharing it with me. I am so fortunate to be here with her and more importantly, I am fortunate that my children are here and are very compassionate about this awful disease. I asked her recently if she knew who I was and she responded, "Don't make me use my brain, it's not working right...I know you are someone who treats me very nice." That was good enough for me! She has recently began taking some medication and I am seeing slight improvement. Last night, I heard her ask Don, "Is Lynette in the bedroom sleeping?" I was thrilled to hear her say my name!!

I am so thankful that Don is here with me and helps me so much with the care of my mother. He has so much patience with her and I often hear him from the other room repeating an answer to a question over and over again, just as if it were the first time she had asked the question.









Sunday, September 11, 2011

Tumor Marker Update!!

Don was recently seen for a follow-up after having a CT scan and blood work done. His liver remains tumor free and his tumor marker has dropped once again. For the last year his AFP has remained in the 104 to 109 range. Don's latest blood test shows his AFP has dropped to 88.9!! If you remember, his AFP was 55,000 in July 2008 - we are more than thrilled each time we hear that the marker has dropped.

We are truly thankful for the great nutrition Don receives each day through his shakes. We are certain, without a doubt, the nutrition provided by the shakes gives Don's body what it needs to fight back against his cancer. We are thankful we pushed our skepticism aside and gave the shakes a chance. I thank God everyday that Don followed the regime and did what we heard helped others fight the fight. We are forever grateful to Blessed Father Seelos for his comfort and guidance. We are grateful for Nexavar and it's tumor blocking capabilities - Prayer, Shakes, and Nexavar continue to help Don fight the fight!