WEEK 5

Sunday July 29, 2012 Day 30
Friday was the last day of week 4.  Tuesday we spent the day at the Cancer Center in Tucson, AZ because he needed a transfusion (2 units) and the doctor he uses, sends all their patients there for the transfusions.  What a lovely facility!  It was a long day, but they made sure he was comfortable for the entire time he was there. . .     : )  His kidney functions GFR were at 27! So they cut back his procraf to 1 mg every other week, and his Riba from 1200 mg to 600 mg a day on July 20 and then after the transfusion on Tuesday, during the Wednesday doctor appointment, they cut it back more to 200 mg a day.  The prograf level was a  bit high (7.9) and that can cause problems with the kidneys, since the riba is eliminated through the kidneys, that dose was cut as he was so anemic (hemoglobin was 7.0 and crit was 25, wbc was 1.4).  The doctors are very good about explaining everything to us.  They said that for the next 8 weeks, there will probably be more changing of doses.  They are going to start increasing the Riba again, once his levels are better, then we will just keep doing labs twice a week to keep an eye on everything.   

I feel that the docs at U of AZ are doing and amazing job keeping tabs on him.  They are always helpful with our questions and our phone calls.  After all that we have been through (especially Gary) these docs are high on our list!  


Still hanging in there, hopefully by this Friday, we will know what his VL is at the week 4 check point!  

PEACE~HOPE~LOVE
Allison

Day 18 of treatment!

July 17, 2012
Good evening!  So Gary is on day 18 of treatment.  He has been struggling with low blood counts.  He started Procrit yesterday, 40,000 units once a week.
Gary has to do labs twice a week, Monday and Thursday.  We also meet with NP on Wednesdays during the High Risk clinic.  We also meet with his PCP once a month and the Endocrinologist once a month . . .  PHEW!!!! lol




Labs from last Thursday.

WBC 1.4
RBC 2.83
Hemoglobin 9.0
Hematocrit 28.6
MVC 101
Platelet 78
Sodium 136
Potassium 5.3
Creatinine 1.7
GFR 42                                                                              
Albumin 3.1
Bili 1.4
Alk Phos 132
ALT 23
AST 31
Prograf 7.6
INR 1.1
Prothrombin Time 14.2


Ribavirin 1200 mg/day
Incivek 6 big purples a day
Peg-Interferon 180 injection once a week
Procrit 40,000 units once a week


So from what I know from previous treatment, this labs are pretty low, his Prograf level is being managed very well.  The start of Incivek turned out not to be so scary.  They cut back on his dose of 1 mg twice a day to 1 mg twice a week, then after second dose in a week, cut it back to just 1 mg once a week.  So far, his levels have been ok.  He has had toxic levels of Prograf in the past, and it is VERY scary!!  So for me, this was one of the scariest parts of this treatment.


PEACE~HOPE~LOVE
Allison and Gary

Skipped right over day 4 and day 5 and onto day 6!!

July 2, 2012
So quite a bit has happened over the past few day.  On day 3, Gary got confused and took his midnight dose three hours early.  We are from Vermont and we have direct TV in our RV.  That is connected to the TV in our bedroom.  As the shows are based on the eastern time zone, we left the clock by the TV set to EST.  Well, that is three hours ahead of Arizona time currently.  When Gary saw the clock in there as 12:30 am, he thought it was time for his Telaprivir and went ahead and just took the dose, not with 20 g of fat and did not even think about telling me about it, just took it!  I was in the kitchen putting the trail mix recipe together and when I was done, I said to Gary that I had finished the recipe and I had his portion all measured out for his midnight-30 dose.  He said that I was a little late as he had just taken his dose 10 minutes ago.  Unfortunately I freaked a bit.  I was just really scarred that this would cause so many problems.  The doctors and all support people for this treatment beat it into your head to MAKE SURE you take the Telaprivir 8 hours apart at the same time each day.  So I called the hot line at Incevik and a nurse called us right back with in 25 minutes.  She assured us that all was fine.  This was not something he should do often, and he may have some side affects, but just keep an eye on them and it will be ok.  Basically she calmed a hysterical wife down very well!! LOL

July 3, 2012
Onto day 4, nothing terrible is happening yet.  Gary is tired and already tired of eating so much fat.  I am working help him find a menu that will help him want to eat!  This will cause some difficulties for us along the way, I can tell, but we will figure it out like always~!

 

July 4, 2012
On to Day 5!  Which just happens to be the 4th of July!!  Gary has still not experienced anything too difficult.  He said if this is the worst of it, he would be fine!  The worse part for me are his moods.  As a very gentle man, he says some very hurtful things to me.  I just let them roll of my shoulders or I give it right back to him.  I can not tell myself how I am going to react to some of his words. . . until after the fact!  

Monday, Day 3! Wooohooooo!

Well we made it through day three, almost.  4 more hours until the dose of the day.  I did come up with some good ideas about some fat/fiber meals today.  Gary has had a busy day, as we went to the hospital for his first round of labs, including a VL.  Tomorrow we have a 1:10 appointment with Dr. Habib and NP Carol Peters.  They will have the lab results then and I am curious to know how Gary is doing.  He seems very tired, but he still has his humor and is being kind.  This is nice.

Xander

He got to talk to Xander this morning, our grandson.  Xander called my cell phone and Gary answered it.  "GRANDPA!!" was how he was greeted.  Big smiles and some good conversation and lots of love.  Then Gary spoke with Donovan, my son, Xander's dad.  They had a nice conversation as well.  Gary also spoke with his mom this morning.  I spoke with his sister Sue, she has called us every day since we left Vermont (August 2011)  she is an amazing support, sister and best friend!! XXOOXX  We spent some time with Elaina, my daughter, she came by for a visit and to take me for a quick shopping trip.  I spoke with Kelly this afternoon, Gary's daughter, she was doing well and missing her dad!! She spent the weekend with family in Vermont.  I talked to my mom today as well.  Everyone is so supportive and full of love . . .  (ah love!)  

Grand daughter Alexis, Kelly's daughter

I thought maybe Gary would be into a bike ride tonight, but not yet . . . maybe we will give a shot for tomorrow morning.  He wants to go, but just does not feel well enough yet for that.  It is also very hot out, and the heat and sun is not a good mix with his treatment drug Telaprivir.  So if we can get out there in the early morning, it may work out for tomorrow.  

CLICK HERE FOR NUTRITIONAL INFO
Meals went well today too.  Two new things we are going to try are whole wheat pasta and cheese (swiss and cheddar) and whole wheat french toast.  A large egg has 5 g of fat and the recipe I use for french toast takes 2 eggs and I use whole milk, but I could use some whole milk and some heavy cream with all spice . . . yum!!!!  And real Vermont maple syrup, what could be better???   I am also putting together some home made trail mix with dark chocolate chips, almonds, cashews, dried cherries and raisins.  I am going to offer that tonight for the midnight dose.  This is actually kinda fun.  I think I could easily put together a cook book for this treatment.  I am trying a lot of different recipes.  Might as well make the best of it.  Oh yeah, my mom is sending me a bran muffin recipe that came from my grandmother.  I do remember this muffin from my childhood.  I am going to add up the ingredients and with a little doctoring, I bet I could make it fit the 20 g fat and our goal of 5-6 fiber per muffin!  We shall see . . .lol


Well I guess that is about it for today.  I have uploaded a bunch of pictures that I will post tomorrow if I have time.  I will post a couple of my favorites below as a farewell to day 3!

Gary had to hike off the path in Saguaro national park for this pose!!!

Gary with his favorite food

Chatting with sister Sue.

Helping me with the laundry . . .

Day 2

Already day 2!  Wow!  Day 1 was all three doses of Incivek and two doses of ribaviron and then the weekly dose of pega-interferon.  All was going very well, until bedtime, then Gary started to get the chills and a fever.  I am not sure which thing triggered that, but it lasted all night, so neither of us slept real well.  The good thing was that his blood sugars were all lower than usual, but I was nervous about that, so about every 2-4 hours I was checking his blood sugars.  He was a good patient yesterday and even all night.  The 2 am blood sugar test he was a bit grumpy about, but he did fine.  

This morning he woke up very nauseous.  That wasn't fun, but after a trip to the bathroom, he was able to rest peacefully until his morning dose at 8 am.  Today he has been very tired and has rested most of the day, as did I.  His fevers have been better and no chills today.  He ate whole grain pop tarts and coffee for breakfast followed by fresh cherries.  He had a small slice of pizza for lunch, and ice cream and a couple oreos this afternoon for his 4 pm dose of Incivek.  He has been drinking a lot of water as well.

As far as side effects (sx), nothing other than chills, fever, nausea and aches and exhaustion.  It seems a bit early for all that, but maybe not.  Tomorrow we will head to the hospital for his labs.  They are going to test for Prograf levels, CBC, CMP and INR and also VL.

We have talked to several family members today and I appreciate all their support!  Thanks!  xxooxx

PEACE~HOPE~LOVE
Allison and Gary

 

Down the hatch!

We woke this morning to our alarm going off, that is a first for a long time!!  It actually felt good to have to wake up!  lol  Gary ate 1 cup of raisin brain (7+ grams fiber) with whole milk (fat) and his coffee with heavy cream (more fat).  Talk about a treat!  So we measured 21 grams fat and 7+ grams fiber.  Then 20 minutes later with the last bit of his coffee, down went the pills.  He is sitting in his favorite chair with his head phones on, listening to music on his cell phone . . . Marshall Tucker Band . . .  

Blood sugars were fine, 129, so now we have to see how the medicine affects those numbers.  My hope is that they will not, but our Doc said that the numbers may be lower, so we just have to keep an eye on those.  

Today is another beautiful day in AZ, I am sure it will be at least 100!  fun fun fun!

June 30, 2012 ~ 6 hours until treatment starts . . .

Well, it is 1:59 am and I can not sleep.  Gary fell asleep finally about 20 minutes ago, and I got up and puttered around the kitchen a bit, now I am wide awake!  We both tossed and turned in bed for quite some time tonight, neither of us could put a finger on all the thoughts racing through our heads. . . 

While talking with Elaina today and tonight, she verbalized her concerns about the fact that if this treatment does not work, then this could be the last chance Gary has.  Even though I have talked to all the children about this fact, I am not sure if they or I for that matter, completely grasps this fate.  

I do feel blessed to have this time to share with Gary, as many of our loved ones don't have this time.  A unforeseen destiny is troubling no matter what the circumstance may be.


I set all the alarms on my phone tonight to help us remember the times to take the Telaprivir every day.  I also have signed up for daily text message reminders through the Incivec web site, (for those of you who know me well, I don't do the same thing ever at the same time ever, and I am not "punctual") This treatment medicine must be taken every 8 hours and at the same time every day.   This is one of the very important factors to help this medicine attack and conquer!  I really hope with all the tools I am trying to use, I can stay on top of this . . .


The pills are really big and purple.  They look intimidating.  I suppose after the first week passes, the fear of the unknown will not be so strong, and we will be able to feel more at ease about this whole process.  At least I hope that is what happens . . .


The wind is very strong tonight and it is causing lots of noises that I am not used to hearing at night.  We also do not have the A/C running, which normally drowns out much of the night time noises.  It would probably be in my best interest to shut down for the night, or at least give it a try, as this day is more than likely going to be nerve racking to say the least! 

PEACE~HOPE~LOVE
Allison