Hi everyone,
Isn’t’ this a cool picture?? This was one of our turtle patrols that we do every summer. We get to ride the beach in this vehicle at sunrise. We see the most awesome sunrises and have great fun driving this truck up and down the beach. This is one of my heroes, Florence Carol!!
Now on the latest Chemo Report….
Yesterday was my third session and it has convinced me that I need to get some changes out of my current oncologist or I need to find another one. I have lost a lot of confidence in my doctor (more on that in a minute) but more importantly than that, his entire support staff,( from the front office, to the chemo nurses, to the appointment makers, to the money takers) are all a huge pain to deal with. They all act like they hate their jobs and nobody tries to provide a hint of personalized health care to me.
Here is a good analogy: My first experience was like going to a Spa. Everyone made an attempt to make you feel comfortable and special and they did their best to give you the best care they could. This experience is like taking your car to Jiffy Lube. They drive it into the bay, they drain the old oil and put in the new oil and drive it out of the bay. I feel like a car at Jiffy Lube with these people.
As for my doctor, in his defense, he listens to me and will do whatever I want him to do. With that said he has screwed up the orders for the chemo drugs 2 weeks out of 3. The first week everything was right. In week 2 the nurse walked up to me and said “OK now I am going to give you your Oxaliplatin” Oxaliplatin is the drug that ruined my hands and feet 4 years ago. Not only would the doctor know better from talking to me, but I would NEVER let anyone put that drug in me again.
Sure enough though, he had mistakenly written the orders for it and the nurse had to track him down to get it changed. This is an unbelievable mistake to me…there is nothing worse he could have written on that order than Oxaliplatin.
So because of my reaction to Erbitux in Week 1 we had decided that we would skip Week 2 to get back on track and then for Week 3 we would exchange Avastin for Erbitux. Fine…except when I showed up there for Week 3, the nurse had the same orders from Week 2!! It was a xerox copy of the Week 2 and it said “No Erbitux/Avastin” Since the doctor was not available I just said “Fine, who am I to want extra drugs, let's just go without the Avastin, but this is yet another mistake on his part.
So what do I do about this? There is another clinic here in town that everyone seems to love so here is our plan. I am going to make a mid-week appointment with my oncologist and let him know how I feel about the level of care I am getting from his staff. I am going to request that I always have the same nurse (the only 1 have seen who knows what she is doing) instead of a different nurse every week. I want him to know that I have lost a bit of confidence in him due to his orders being incorrect 2 out of the first 3 weeks. I am going to request that he review his orders with me before he gives them to my nurse
If he is ok with all that then I might stay….but I might not. I will also be checking out the other clinic and seeing if I should just move there anyway. Carol is going to do the groundwork on that because she is better than I am at asking the tough questions up front, I tend to just trust that everyone knows their job and will do it.
That is the plan, its Time to go Shopping for good Oncology care
On to the symptoms, they are not so great but tolerable. I think I am feeling slightly worse this Sat than I was last Sat and it scares me because the crap is still dripping inside me until Sun so I know that I haven’t reached the worst yet. Last week I was unable to work on Mon and Tues and I suspect that is going to be true, at a minimum this week. Thankfully I continue to have great support from work and I am getting paid without having to use sick days or personal days….
I will try and update the blog on Mon or Tues and let you know if I hit bottom or if this week is better than last by some chance but I am thinking it will be the same.
If I had to describe the symptoms its like the worst flu you have ever had with head, stomach, bone pain, nausea, vision problems, dizziness, etc ….so that all you want to do is lay in bed and pray for the next day to come. In my case I am praying for Wed because I know its not done until then.
But…it is tolerable, it just ain’t fun. And nobody ever said it was easy or fun!!
Peace and Love,
John and (Florence) Carol
