I got my official diagnosis from the hematologist yesterday. It is as he suspected --
CHRONIC LYMPHOCYTIC LEUKEMIA, STAGE 0
He called it Stage 0 because I am asymptomatic and there is nothing to treat. He did order one more blood test and a baseline CT scan, but I don't have to come back for three months.
This disease is one that is just observed, which is good. It's just there, doing nothing.
Until there are symptoms, or until one of these tests comes up either positive or shows something, there is nothing to treat, so I shall continue to live my life as I have been. That's all I can do.
I am so very mixed up in my brain as to how to feel about this. I really don't want to have it, but to have it is better than to have anything else, except chronic fatigue.
I feel that it is an unnecessary burden to Ron that I have cancer. The cost - right now, minimal - of this down the road boggles my mind, and he has NO idea. He doesn't deal with finances. There will be so many problems, money-wise, way more than what we have now, and we are already in a pretty deep hole. I've got us in a good place - on a ledge, as it were - in this deep hole, but until I get my disability settled and coming in, it's not what it should be. There is a tiny light shining at the top, though, and we'll keep focused on it!
But.....there it is.
Tuesday, May 3, 2016
Wednesday, April 20, 2016
The End Begins....continued, as promised
March 31st
I went to my scheduled appointment with Dr. Ward. I had figured that he was going to order more blood tests and start trying to figure what kind of infection I may have.
Instead, he really threw me a curve ball and told me that because my lymphocytes were what was high (part of the white blood count), he was going to send me to a hematologist! Not just a hematologist, either, but a oncologist hematologist. And I don't know about you, but I certainly know what the word "oncologist" means! He and I also talked quite a while about the many things it could be - Epstein-Barr, Chronic Fatigue, Lymphoma, Lymphatic Leukemia, just to name a few - which is why he was not comfortable doing any more testing himself, and so it's off to the specialist.
As soon as I got out to the car, I called and made an appointment. Since I wanted to go over by Clermont Mercy Hospital, the first open appointment was April 18th. They wanted to get me in within a week, but I assured them that urgency wasn't necessary. This is more exploratory at this point, to try to figure things out, and a 2-week wait was okay with me.
Now, during this 2-week period, I did plenty of research. I researched high white blood count, and all of the 'diseases' that Doc had mentioned, and then I researched any others that came up while doing this research, including Hodgkin's and non-Hodgkin's lymphoma(s), so I felt that I was pretty well informed when the time for the appointment came. I also asked my friend Bert to come to the appointment with me, just for an extra set of ears and eyes, as well as a brain, to digest the information and possibly come up with questions.
April 18th
I felt ready for anything the hematologist would tell me. I knew what I thought would be the best thing to have - Chronic Fatigue - and that if it was anything worse than that, I would have to deal with what it was and deal with it then. I just needed a diagnosis to start from.
The day came, and the appointment went about as I expected. They first drew blood to compare my blood count with the one from March 25th. It was almost exactly the same, which, I suppose, was a good thing. As the doctor came in, I was surprised to see how young he was (I guessed early 40s - ye gods, I'm getting old!), but that's neither here nor there. We did the pleasantries, then got right down to business. He explained things very well, and he also said a lot of the things that I had read in my research, so it wasn't new to me. As the visit went on, he had me get up on the table so he could listen to my heart and all that, as usual. I told him about the lumps on my back that I thought were sebaceous cysts, but Ron, Doc, and Dr. Shiff couldn't feel them, and he tried to feel them, too, and could not. He also pressed up and down on my spine and I couldn't help reacting when he got down at the degenerated disc. I had told myself not to move, not to move, but it didn't matter - my body just jumped. Then I had to explain about the fall, the broken back and the degenerated disc, arthritis and all that. That part was frustrating!
We continued talking about all the what-it-could-bes and he said that he was pretty positive that it was asymptomatic Chronic Lymphatic Leukemia, after listening to my answers to his questions and looking at my history and my blood counts and all. He will have to do a couple more blood tests to be positive, but that is what he is thinking. That was my second 'guess,' so I was rather relieved to hear him say that instead of anything else. It would have been nice if he had said Chronic Fatigue instead, but - not to be.
He ordered his blood tests, and they took my blood, and this visit is over. I will come back in 2 weeks to get the results, and, hopefully, my final diagnosis.
We go out to the car. I let my close family and friends know the news (the second best of the worst news!), and Bert and I go to lunch.
We went to Longhorn and I was good - I had one of my almost-perfect salads!
Now
Chronic Lymphatic Leukemia. They used to call it "Smoldering Leukemia," because there is nothing to do but watch it. You, the patient, are asymptomatic, and they can only treat symptoms. As long as there are no symptoms, you are "fine." They will just keep an eye on you. If the white blood cells overwhelm the red cells, they will give you a transfusion of red blood cells. That's it.
TO BE CONTINUED...when there is something to tell!
I went to my scheduled appointment with Dr. Ward. I had figured that he was going to order more blood tests and start trying to figure what kind of infection I may have.
Instead, he really threw me a curve ball and told me that because my lymphocytes were what was high (part of the white blood count), he was going to send me to a hematologist! Not just a hematologist, either, but a oncologist hematologist. And I don't know about you, but I certainly know what the word "oncologist" means! He and I also talked quite a while about the many things it could be - Epstein-Barr, Chronic Fatigue, Lymphoma, Lymphatic Leukemia, just to name a few - which is why he was not comfortable doing any more testing himself, and so it's off to the specialist.
As soon as I got out to the car, I called and made an appointment. Since I wanted to go over by Clermont Mercy Hospital, the first open appointment was April 18th. They wanted to get me in within a week, but I assured them that urgency wasn't necessary. This is more exploratory at this point, to try to figure things out, and a 2-week wait was okay with me.
Now, during this 2-week period, I did plenty of research. I researched high white blood count, and all of the 'diseases' that Doc had mentioned, and then I researched any others that came up while doing this research, including Hodgkin's and non-Hodgkin's lymphoma(s), so I felt that I was pretty well informed when the time for the appointment came. I also asked my friend Bert to come to the appointment with me, just for an extra set of ears and eyes, as well as a brain, to digest the information and possibly come up with questions.
April 18th
I felt ready for anything the hematologist would tell me. I knew what I thought would be the best thing to have - Chronic Fatigue - and that if it was anything worse than that, I would have to deal with what it was and deal with it then. I just needed a diagnosis to start from.
The day came, and the appointment went about as I expected. They first drew blood to compare my blood count with the one from March 25th. It was almost exactly the same, which, I suppose, was a good thing. As the doctor came in, I was surprised to see how young he was (I guessed early 40s - ye gods, I'm getting old!), but that's neither here nor there. We did the pleasantries, then got right down to business. He explained things very well, and he also said a lot of the things that I had read in my research, so it wasn't new to me. As the visit went on, he had me get up on the table so he could listen to my heart and all that, as usual. I told him about the lumps on my back that I thought were sebaceous cysts, but Ron, Doc, and Dr. Shiff couldn't feel them, and he tried to feel them, too, and could not. He also pressed up and down on my spine and I couldn't help reacting when he got down at the degenerated disc. I had told myself not to move, not to move, but it didn't matter - my body just jumped. Then I had to explain about the fall, the broken back and the degenerated disc, arthritis and all that. That part was frustrating!
We continued talking about all the what-it-could-bes and he said that he was pretty positive that it was asymptomatic Chronic Lymphatic Leukemia, after listening to my answers to his questions and looking at my history and my blood counts and all. He will have to do a couple more blood tests to be positive, but that is what he is thinking. That was my second 'guess,' so I was rather relieved to hear him say that instead of anything else. It would have been nice if he had said Chronic Fatigue instead, but - not to be.
He ordered his blood tests, and they took my blood, and this visit is over. I will come back in 2 weeks to get the results, and, hopefully, my final diagnosis.
We go out to the car. I let my close family and friends know the news (the second best of the worst news!), and Bert and I go to lunch.
We went to Longhorn and I was good - I had one of my almost-perfect salads!
Now
Chronic Lymphatic Leukemia. They used to call it "Smoldering Leukemia," because there is nothing to do but watch it. You, the patient, are asymptomatic, and they can only treat symptoms. As long as there are no symptoms, you are "fine." They will just keep an eye on you. If the white blood cells overwhelm the red cells, they will give you a transfusion of red blood cells. That's it.
TO BE CONTINUED...when there is something to tell!
Wednesday, March 30, 2016
The End Begins? Or is it my brain?
I had a cardiologist appointment on March 21, 2016. It had been eight months since I had been to see him, so I was not really concerned with anything, but I was anxious to see what he would say to me because I don't really push myself about doing things and all.
The visit started with my weight, which was up because I had eaten lunch before going to this 2:00 appointment and my blood pressure being taken, as always happens. My blood pressure today is 90/50. Good grief!
When the doctor comes in, he does all his listening to my pulse points - ankles (where he sees a bruise), neck, belly (where he sees more bruises), and he blurts out, "Where do you get all these bruises?" and I told him that I don't know, they just show up. It's a happy day when I whack myself and I know where that bruise is gonna come from - the nurse chuckled at that. He tsked over that and kinda looked over my lower legs for more bruises while trying to keep it from me that he was doing so, but I had showed him the ones on my arms and I knew he had seen the ones on my belly, so it was no big deal to me.
We talked about the bruising and my different meds, and he finally decided to let me stop taking the baby aspirin every day. He wanted me to stay on the Plavix because of the stents - he didn't want to take the chance of anything interfering with them - so I am cheering inside "Yay! 1 less pill!" then we went on to discussing other things and up came my low blood pressure, and my history of low blood pressure. 100/50 here, 98/69 there, now 90/50 - he thought he should do something about that, too. One of the meds I am taking because of diabetes is to prevent high blood pressure and I'm going to assume it's doing its job very well, because he decided to take me off of that one, too. Trust me, inside I am now doing such a happy dance! Off 2 meds!! Hip, hip, hooray!
Going way over my allotted "15 minutes," we continued talking about this and that, and he decided to order a CBC (Complete Blood Count) just to make sure there wasn't something weird going on with my bruising. I didn't think so, but I deferred to his decision - what can it hurt to find out for sure? So he wrote it up and the nurse gave me the papers.
I left, and happy danced all the way out to my car!
The CBC is a fasting test, so I have to figure out which day is going to be the best day for me to drive somewhere and get this done. I know where I'm going - the lab in Milford, right beside Dr. Ward's office. I prefer this over either of the hospitals, with their endless paperwork and waiting. I finally choose to go on Friday, even though it's Good Friday and my lunch choices will be limited.
I get to the lab right at 12:30, just as I planned, figuring it would be less crowded during the lunch hour, and there's a big sign OUT TO LUNCH TODAY FROM 12:00 TO 1:00. Well, great. I was going to go to Meijer in Eastgate after my lunch, so I decided to go to the Meijer up on 28 to kill this half hour instead. I did so, then went back and let the vampires do their thing, then went to find myself some lunch. By this time, I was pretty hungry! After my lunch, I drove back up to Amelia and did my grocery shopping as planned. All in all, it was a pretty long day.
Late in the afternoon on Monday, March 28th, I got a phone call from the cardiologist. Actually, I got a message on the machine - I wasn't able to get to the phone. He said that my white blood count was very high and I needed to follow up with Dr. Ward as soon as I could.
Well, I already have an appointment in May, I thought. I wonder if that will do?
Not even ten minutes later, one of his assistants was calling. I was able to answer the phone that time, and I talked to her. She urged me to make an appointment with Dr. Ward, and I told her that I had one in May. She said that my white blood count was almost double what it should be, so my body was fighting some infection and do not wait until May. I told her that Dr. Gupta had said that he would be calling Dr. Ward, too, so I would wait to see if they called me because I didn't want to be crossing things up. She said that if I didn't hear from them to call that next afternoon and let them know Dr. Gupta wanted me seen. Wowza!
Luckily, Dr. Ward's office did call me on Tuesday, the 29th and now I have an appointment to go over and see him on Thursday the 31th. At 9:15. 9:15!! Yipes! I will have to get my lazy ass up out of bed and leave my house by 8:30....ai yi yi!
To Be Continued
The visit started with my weight, which was up because I had eaten lunch before going to this 2:00 appointment and my blood pressure being taken, as always happens. My blood pressure today is 90/50. Good grief!
When the doctor comes in, he does all his listening to my pulse points - ankles (where he sees a bruise), neck, belly (where he sees more bruises), and he blurts out, "Where do you get all these bruises?" and I told him that I don't know, they just show up. It's a happy day when I whack myself and I know where that bruise is gonna come from - the nurse chuckled at that. He tsked over that and kinda looked over my lower legs for more bruises while trying to keep it from me that he was doing so, but I had showed him the ones on my arms and I knew he had seen the ones on my belly, so it was no big deal to me.
We talked about the bruising and my different meds, and he finally decided to let me stop taking the baby aspirin every day. He wanted me to stay on the Plavix because of the stents - he didn't want to take the chance of anything interfering with them - so I am cheering inside "Yay! 1 less pill!" then we went on to discussing other things and up came my low blood pressure, and my history of low blood pressure. 100/50 here, 98/69 there, now 90/50 - he thought he should do something about that, too. One of the meds I am taking because of diabetes is to prevent high blood pressure and I'm going to assume it's doing its job very well, because he decided to take me off of that one, too. Trust me, inside I am now doing such a happy dance! Off 2 meds!! Hip, hip, hooray!
Going way over my allotted "15 minutes," we continued talking about this and that, and he decided to order a CBC (Complete Blood Count) just to make sure there wasn't something weird going on with my bruising. I didn't think so, but I deferred to his decision - what can it hurt to find out for sure? So he wrote it up and the nurse gave me the papers.
I left, and happy danced all the way out to my car!
The CBC is a fasting test, so I have to figure out which day is going to be the best day for me to drive somewhere and get this done. I know where I'm going - the lab in Milford, right beside Dr. Ward's office. I prefer this over either of the hospitals, with their endless paperwork and waiting. I finally choose to go on Friday, even though it's Good Friday and my lunch choices will be limited.
I get to the lab right at 12:30, just as I planned, figuring it would be less crowded during the lunch hour, and there's a big sign OUT TO LUNCH TODAY FROM 12:00 TO 1:00. Well, great. I was going to go to Meijer in Eastgate after my lunch, so I decided to go to the Meijer up on 28 to kill this half hour instead. I did so, then went back and let the vampires do their thing, then went to find myself some lunch. By this time, I was pretty hungry! After my lunch, I drove back up to Amelia and did my grocery shopping as planned. All in all, it was a pretty long day.
Late in the afternoon on Monday, March 28th, I got a phone call from the cardiologist. Actually, I got a message on the machine - I wasn't able to get to the phone. He said that my white blood count was very high and I needed to follow up with Dr. Ward as soon as I could.
Well, I already have an appointment in May, I thought. I wonder if that will do?
Not even ten minutes later, one of his assistants was calling. I was able to answer the phone that time, and I talked to her. She urged me to make an appointment with Dr. Ward, and I told her that I had one in May. She said that my white blood count was almost double what it should be, so my body was fighting some infection and do not wait until May. I told her that Dr. Gupta had said that he would be calling Dr. Ward, too, so I would wait to see if they called me because I didn't want to be crossing things up. She said that if I didn't hear from them to call that next afternoon and let them know Dr. Gupta wanted me seen. Wowza!
Luckily, Dr. Ward's office did call me on Tuesday, the 29th and now I have an appointment to go over and see him on Thursday the 31th. At 9:15. 9:15!! Yipes! I will have to get my lazy ass up out of bed and leave my house by 8:30....ai yi yi!
To Be Continued
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