Yesterday's post was a quick overview of how my day went. I'll describe it in more detail now that I am feeling better.
We arrived at the hospital early yesterday( Thursday) morning to again eat breakfast before another long day. I was to have an appointment with the oncologist, naturopath, nutritionist, and nurse navigator. My first appointment was scheduled for 8:45 with the oncologist.
We entered the exam room after waiting just a few short minutes. The nurse did her usual thing, temperature, blood pressure, asked a few questions, and exited the room. The doctor, who spoke with a Scottish accent, entered shortly after the nurse had left.
He was an older gentleman. He was very knowledgeable and took a lot of time explaining my situation to me in depth. And I asked lots of questions, so many he asked what I did for a living because he thought I had a medical background. I just laughed and smiled. I thought to myself, no it's called google and my natural curiosity of wanting to know the answers to why and how. Anyway, he had a new plan, unfortunately one that still involved chemo.
The plan when I was seeing the doctors in Pittsburgh was a total of 8 rounds of chemo therapy, 4 of a combination of adriamycin (nicknamed the RED DEVIL) and cytoxin, and 4 of another called taxotere. The rounds would be given 3 weeks apart which meant I would be done in July. The new plan, his plan, was 4 rounds of chemo total, so just 3 more. He said he wouldn't have given me the kind that the Pittsburgh doctors had given me, calling it old fashioned. But since I had already had it, he would give me one more round of that, then 2 rounds of another combination, a combination with less side effects, both immediate and long term. I was relieved, but just slightly. I really, really, really don't want chemo at all, but who does.
There is good news. Based on the physical exam the lump has decreased in size significantly. It was originally 1 and 1/2 centimeters according to the sonogram back in the early part of February. It is now less than 1 centimeter.
The doctor was also aware of our situation from the previous day when everything had basically gone wrong. He actually already had a full schedule but when our nurse navigator told him what had happened, he had agreed to see me. He added that we never should have been brought out to Chicago this week and that he would personally speak to administration about paying for our next trip, both the flight and hotel.
He went over my lab results with me as well. My white blood cell count is only 170, which apparently is very low, so chemo therapy isn't possible at this time, which is fine by me. I really need time to mentally prepare for the next round anyway. As I had mentioned in my last post, they gave me an injection of neupogen at the hospital. I will need to continue it for 4 days at home by self injecting. I have several nurses in my family, so this really won't be an issue. I'll just have one of them do it for me. This should increase my white blood cell count enough over the next week that I will be able to return for a treatment next Friday. I will just need to have my blood drawn in Pittsburgh two days prior to my trip to make sure.
Of course no medicine comes without side effects. One of the side effects of neupogen is bone pain and fever. What I experienced yesterday was the same kind of achy feeling you have when you have the flu, expect a large majority of the pain seemed to settle in my lower back making it feel more like back labor. Bob was able to buy some advil at the front desk of the hotel which helped enough that I was just able to go to sleep.
Going back to the rest of my day and the rest of my appointments, I really don't have much to say about it. I found that both the naturopath and the nutritionist only had basic knowledge. Some of what I am already doing went above what they knew. I'm sure for a lot of people they would have been helpful, but they weren't for me, which was kind of disappointing. Both of them were very young and inexperienced, which may have been part of it.
The only other thing of any significance was that I had my blood drawn for the genetic testing I had mentioned before. The test is to determine whether I have the gene for breast c*****. They like to do this test when you are diagnosed under 5o years of age. There is only about a 5% chance that I do have the gene and if I do I would have to consider the possibility of a double mastectomy or possibly going through this again in the future. And since I never what to do this again, the choice would be very clear for me.
I almost forgot. We had the opportunity to speak with patient relations yesterday, as well. They will be pulling the tapes from our conversations with their intake specialist, Mark, who gave us all the misguiding information. A lot of what he told us was incorrect and he seemed to be playing into what we wanted to hear. Now, I'm not too terribly upset because I would rather do this plan than the other one, but it's still wrong to mislead people. And the lady we spoke to also assured us that our next trip out here would be covered just as if it were our first.
So that about sums up our second day. The rest of our time at the hospital yesterday was spent going between departments getting everything scheduled for our flight home later today and appointments and flights scheduled for next week. And while it wasn't everything I had hoped for it is better than what I had. Continue to pray for me, it's still a long road ahead to travel.
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