Tuesday, April 26, 2011

Waiting on a trend

I saw the oncologist again today. She basically wants me to do blood work again and see her back in June. It can get a bit frustrating waiting in waiting rooms for hours on end to be told to come back again.

At any rate, she did not again specifically say "you have smoldering myeloma", how ever she did say things like "in other patients I've seen who have smoldering myeloma, they.....blah blah". I was almost afraid to say "so, is it smoldering myeloma?"

She said that she wanted me to do additional blood work so she could see a trend of how quickly (or slowly) things were progressing. I can only assume that there has to be something actually there in order for it to "progress". So I'll have to get more blood work done in a week...then wait.

I spoke to her about her comment last time about one's immune system helping them fight cancer. She mentioned that as one of the possible problems with getting a transplant and being immunosuppessed and then developing cancer. She said that the the degree of immunosuppression is quite different from someone with cancer and someone who has a transplant. I mean, right now, I'm on 5mg of prednisone. I can't imagine what kind of dose I'd be on after transplant. She said she was going on a myeloma conference in France, so she would consult with some of the other doctors there. She also said that she would email her contacts at the Mayo clinic to see what they had to say about transplant and smoldering myeloma (hmm, I guess her saying that is also another clue that this is perhaps what I have...I guess I simply do not want to "claim" it).

That's all for now I guess. Will blog again later.

Saturday, April 23, 2011

It's coming..

My appointment with the oncologist is next week.

...so is my appointment with the dermatologist.

...so is my appointment with my nephrologist.

Lucky me! They're all on a different day of the week! Man, this appointment stuff is really a full time job (especially the oncologist). I'm hoping I won't have to spend like 3 hours waiting for the oncologist this time. Her clinic starts at 10am and my appointment is at 12pm, so hopefully if there IS a backlog, I won't be as far back as I was when my appointment was at 1:30pm like last time.

We shall see. I suppose I should be more concerned with what the oncologist will have to say. I am.


Tuesday, April 5, 2011

More Waiting

Can stress cause nose bleeds? Because once I managed to toss and turn myself to exhaustion and finally fell asleep last night, I was awoken at around 3am to the feeling of my nose bleeding. Luckily I had a box of tissue near by, but it's always difficult when your nose is bleeding and you can't readily get up because you're attached to a dialysis machine. I managed to get the bleeding to slow down after about 45 minutes. I heard my sister walking by my door so I asked her to grab me some ice. It stopped just long enough for me to wake up to the "END UF" alarm on my dialysis machine. I'm glad that it stopped long enough for me to sleep because I simply cannot sleep with tissue in my nose.

I went to my oncology appointment. I must say that I wasn't happy with the amount of time I had to wait. My appointment time was 1:30. At 2:30, I asked when I'd be seen. I was told that there were still two people in front of me. Huh?? How can I have two people ahead of me when my appointment was supposed to be an hour ago??

Anyhow, long story short, the oncologist, who, by the way, is a lovely lady, told me that more information is needed. So she ordered more blood tests and I will see her back in 3 weeks. Kinda frustrating as I want to know what's going on. She explained to me that some people might have up to 5% protein in the blood/bone marrow...but I happen to have 15%. The x-rays I did were normal. She is concerned that if I do have myeloma but it's the type that does not need to be treated right away (let's say, not for another 10 years or so), having the transplant and taking autoimmune drugs might be detrimental as the immune system helps the body fight off cancer. This could cause problems in the future. She wasn't saying anything specific, she was just giving me a number of scenarios.

What I don't understand is...I'm ALREADY immunosuppressed, so whether I get a transplant or not, I'm always going to be immunosuppressed due to the Lupus. I did ask questions and make statements but I did not think of that. It was obviously a concern for me and I'll have to write that down and take it with me to our next appointment depending, of course, on what she has to say.

So it will be a bit more waiting and wondering for me. I went into that appointment and thought of all the kind and encouraging words that many have shared on my blog. The power of the prayers directed towards me is absolutely incredible. I am amazed and humbled by the love I have and am receiving.

Let's keep it going. If you've read some of my previous posts, you'll have read some of the things that I have gone through...and I'm here to talk (blog-hehe) about it.

This too shall pass...
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