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Some Decisions & a little update


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This is "good news" for me, as it's about some things that have bubbled around in my mind lately, and I've finally made some decisions that I think will help me stay on a positive course.

Today marked the halfway point in the radiation therapy, and I had a CT scan this morning so they can plan out the remaining half. Last week I was to have started round 4 chemo, but platelets were down to around 85,000 and they wanted them around 100,000 for chemo, so put it off until yesterday. Platelets were "well over 300,000" - wow, what a difference!

To coincide with the end of the chest radiation will be the follow up CT/PET scan and a "see where we are" meeting. I will see the Oncologist, and then back to the Radiation Oncologist to discuss and schedule PCI which will start after I've had a few weeks break from chest radiation and chemo.

So far, so good, but now the little pinches of fear have to do with withdrawal, I think! As long as they are frying my chest every day and I'm taking chemo, I feel like I'm DOING something to rid myself of the bad cells. When that slows down or stops, I am prepared to have to mentally adjust to the difference. Oh well -- will come to that soon enough, I guess.

The big decision I've made is that once I'm done with this last CT/PET scan and have seen the Oncologist (Dr. Gloom & Doom), I have an appointment the next week with the Pulmonologist -- my hero. When I see him, I am going to tell him that I prefer to follow up with him and my primary care doc for diagnostic matters, and if I need any more chemo or need an Oncologist from then on, I want someone else. I've really had it up to *here* with this Oncologist, and from what I've seen of some of the others in his practice, he's really just a cold fish, and I don't need someone like that on my team. A different Oncologist in that practice would confer with him about the treatment anyway, and they all work together on protocols, so I will be just as well off technically speaking as I ever was.

If this Oncologist wants to know why I made this decision, I have no problem telling him, as I will be telling the Pulmonologist and have already told my primary care doc. I was just mentally exhausted with all the "what ifs" and 2nd guessing I was doing with this Oncologist, and decided that I did NOT need that in my life, and that I was going to get rid of it once and for all. So there! ttthhhppptttt

As for now, I'm still feeling good -- was feeling extra good in the few days I had waiting on platelets to come back up! -- have good strength, still able to work, hardly any side effects, still have my hair (or will have it until they hit me with PCI!!), and feel really positive about my life in general. Before being attacked by the scourge, I had no guarantee about how long my life here on earth would be, and I still don't have one, and don't want one. I will do what I can as long as I can, and that's all I can do.


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It is hard to imagine dealing with a doctor that you flat out don't like. This journey is tough enough. Why would we shop for days for the right pair of shoes but, so often, take the first oncologist we see.

Dianne, you gotta do what you gotta do, go for it.

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I totally understand your feeling you are fighting while they are sending radiation to your chest and giving you chemo on a regular basis. I was faced with the same fears as you when my treatment was ending last fall. I felt like, OK, now what am I doing to fight this?

My partial comfort has been to develop a program of taking supplements and trying to practice a healthy lifestyle in terms of diet, exercise, rest, and mental attitude.

My oncologist did not want me dieting or taking much in the way of supplements during chemo or for one month post treatment, because the chemo works in your body for up to a month after the last treatment, but during the time I couldn't do supplements or diet, I studied what I wanted to do and got ready. Then, when the time came, I started with the supplements and kept reading and trying to learn more about diet and exercise.

I now take a lot of supplements and try to practice good eating habits. I bought a book called Superfoods RX and am trying to practice their good eating theories. I also make sure I rest, get plenty of sleep, exercise, and have some fun along the way as well.

You'll hear a lot of these folks on this board talk about the monsters under the bed and I sure do have them at my house just like they do. But, I feel at least I'm doing something to keep them quiet and out of my way.

My therapist told me early on with all this that there is only so much about life I can control, and as long as I'm satisfied that I'm doing everything I can, I have to leave the rest to the doctors and to God. Took me a really long time to accept all that, and I have to be able to know that I'm working as hard as I can at staying well, but I have really come a long way since last year.

I wish you all the best of luck in your efforts to remain healthy.

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Dianne - Good for you!

Your attitude guarantees a better journey. It's always good to see someone stand up for a dr. who will treat them the way they NEED to be treated.

My mom had to take time off from treatment for low platelets, also - and it worried her just like you experienced. But she's NED, and getting stronger.

Enjoy! And thanks for sharing.

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